Live Like the World is Dying—S1E101

Leah on Disability and Preparedness

Episode Summary

Leah Lakshmi Piepzna-Samarasinha (They/She) is a writer and structural engineer of disability and transformative justice work. Leah can be found at brownstargirl.org, on Instagram @leahlakshmiwrites, or on Bluesky @thellpsx.bsky.social

Their book The Future is Disabled: Prophecies, Love Notes, and Mourning Songs can be found:
https://bookshop.org/p/books/the-future-is-disabled-prophecies-love-notes-and-mourning-songs-leah-lakshmi-piepzna-samarasinha/18247280

Their book Care Work: Dreaming Disability Justice can be found: https://bookshop.org/p/books/care-work-dreaming-disability-justice-leah-lakshmi-piepzna-samarasinha/16603798

Host Info

Margaret (she/they) can be found on twitter @magpiekilljoy or instagram at @margaretkilljoy.

Publisher Info

This show is published by Strangers in A Tangled Wilderness. We can be found at www.tangledwilderness.org, or on Twitter @TangledWild and Instagram @Tangled_Wilderness. You can support the show on Patreon at www.patreon.com/strangersinatangledwilderness.

Transcript

 Margaret  00:15

Hello, and welcome to Live Like the World is Dying, your podcast for what feels like the end times. I'm your host, Margaret killjoy. And I always tell you that I'm excited about episodes, but I'm really excited about this episode. It put me in a better mood than when I started the day that I get to record this episode. Because today, we're going to be talking about disability and preparedness. We're gonna be talking about Covid abandonment. And we're gonna be talking about a lot of the questions that... a lot of the questions that people write us to talk about that they have about preparedness and I think that we can cover a lot of those. Not me, but our guest. But first before the guest, a jingle from another show on the network. Oh, the network is called Channel Zero Network. It is a network of anarchists podcasts and here's a jingle. [sings a simple melody]

Margaret  01:08

Okay, and we're back. So, if you could introduce yourself with your name, your pronouns, and then I guess just a little bit about how you got involved in thinking about and dealing with disability and preparedness.

Leah  02:00

Sure. Hi, my name is Leah Lakshmi Piepzna-Samarasinha. She and They pronouns. Right now I live in Pocomtuc and Nipmuc territories in Western Massachusetts. And that is a great question. I will also just plug myself briefly and be like I'm a disability justice and transformative justice old sea-hag, aging punk of color who has written or co-edited ten books and done a lot of shit. Okay, so when I was sitting on the toilet thinking about "What do I want to tell Margaret when we get on the show?", I was actually thinking that my disability and my preparedness routes are kind of one in the same because... So I'm 48 [years old] now and I got sick when I was 21-22. So like back in 96-97. And, it was the initial episode that I got sick with chronic fatigue, ME, and fibromyalgia. And I was just super fucking ill and on the floor and was living in Toronto as somebody who was not from Canada. And, you know, I was just sick as hell, like crawling to the bathroom, like sleeping 18 hours a day. The whole nine. And I'd been really really deeply involved in anarchist of color and prison abolitionist and antifascist organizing and lots of stuff. I had a community, but it was 1997, so most of my community was just like, "What you're sick? Why didn't you make it to the meeting? We have to write all the prisoners with the [untranslatable]." And I was just like, "I just.... Okay, great." Like it was a really different time. There was no GoFundMe, mutual aid, Meal Train, someone brought me some soup. Like, know you, we weren't really doing that. And people really did not have a consciousness around, "You can be a 22 year old brown, nonbinary femme and be really, really sick and be disabled." So something I think a lot, and I've said before, is that disabled people are really used to the concept that no one is going to save us and we are really not surprised when state systems abandoned us because we live in that all the time. And so I was just like this little 22 year old sicko weirdo who'd read my Octavia Butler--and, in fact, that was part of the reason why I was like, "Toronto, great, there's gonna be more water and less heat." Okay, wasn't totally right about that. But, you know, I mean, I really had to save myself and I kind of was like, "Alright, I don't have..." Like, I'm working off the...I'm working under the table. I have hardly any money. I'm gonna make my own herbal medicine. I'm gonna grow a lot of what I eat from my backyard. I'm going to store water. I'm going to run a credit card scam and get a lot of dried goods and live off of those for like a year. [Margaret Hell Yeahs] Yeah, stuff like that. I feel like from there, over the last, you know, 26 years like it's....like, that's the route. The route was, you know, similar to a lot of people, I think of my generation, we were like on the cusp of looking at the current crises of like hot fascist war, hot eugenics war, hot climate crisis, and being like, "It's coming," and I started being like, "Yeah, like don't...don't think that it's all going to work out okay and that somebody else is going to fix it for you." So, I would say that's where my initial route--and then do you want to jump in? Or can I jump ahead like 20 years or something?

Margaret  05:10

Honestly, you could jump ahead 20 years later. I'm gonna come back and make you talk more about Octavia Butler. But we'll do that later.

Leah  05:16

Let's talk more about Octavia Butler because I have a lot of stuff about Octavia Butler and how she thought of--and I think sometimes misused--like nowadays [this is probably not the word but it's untranslatable] and also about disability. [Margaret "Oooohs" curiously] I know. We can get to that. Okay, so that's one route. And then, you know, I mean, I was always kind of like a little weirdo, where it's like, yeah, I grow most of my own food--or as much as I can--and it's not a fun green hobby. It's like, I'm broke as fuck and I need to grow a lot vegetables that fucking, you know, I can mulch and that can stay growing into December, you know? I stashed stuff. Something I also think a lot, is that as disabled people--and we talked about this a little bit when we're emailing--I think we're always prepping whether we call it that or not. Like most disabled folks I know just do shit. Like if you get a prescription and you have extra, you store it, you know? Like, if you can get a double dose, you put that aside. And then maybe you have it for yourself. Or, there's so many disabled mutual aid networks I've been a part of where someone's--I mean, before Facebook clamped down, this is really common on a lot of Facebook disabled groups--someone would be like, "Yo, does anyone have an extra five pills of such and such?" and I've seen total strangers for 15 years of disability justice be like, "Yep, what's your address? I do. I'm gonna mail it to you. I have my old pain meds. I've got this. I've got that." But, um, yeah, like doing the jumping forward that I promised you, so for people who don't know, disability justice as a movement was founded around 2005 by a group, a small group of disabled Black, Asian, and poor and working class, white disabled folks, who were all pretty, you know, gay, trans, and radical. And they were like, "We want to bring a revolutionary intersectional out of our own lives and experiences and issues. We want to create a disability movement that's for us and by us that's not just white, single issue, often cis, often male, often straight." Like, we want to talk about the fact that 50% of bipoc folks who were killed by the cops are also disabled, deaf, neurodivergent, etc... just to give one example. So, you know, that was '05 in Oakland, you know, Patti Burn, LeRoy Moore, Stacy Milbern, Ely Claire, Sebastian Margaret, Stacey Milbern Park, you know, the six. And I was living in Toronto and I moved to Oakland in '07 and I was kind of around for some of the beginnings of it. There's two stories I want to bring in. One actually predates my move. It was right when I was getting ready to leave Toronto, I got invited to go to this reading by a bunch of queer--I think all white--disabled radical folks. And I was just like, "Oh?" And I did the whole, like, "Am I really disabled enough?" and then it was like, "Oh, it's gonna be really depressing." And then it was really awesome. And I was like, "Whoa, disability community. Life saving." But it was kind of one of my moments of being brought into the disability community because there was this writer who was there who, their reading series was actually a choose your own adventure where there's four disabled, queer, and trans folks who are having a sex party and the zombie apocalypse happens. And then they have to figure out how to survive it without abandoning each other. And it was all like, "Okay, you all get to the van, but then there's no ramp. What do you do? Oh! You get this accessible ramp, but it smells like perfume and somebody has NCS. What do you do? And I was just sitting there with my mouth open--and it was also interwoven with like, 'Yeah, and then somebody's fucking somebody else with like, you know, a dildo strapped to their prosthetic,'" and I was like, wow, I fucking love disability. Like, sign me up. But I gotta say briefly, that was one of my first examples of like, you know, there's a really important phrase in Disability Justice, which is, "No one left behind, " right? Like, that's one of the core organizing principles. And that was kind of.... Before I even heard that phrase, I was like, "Fuck like this is..."--because I'd been around antiauthoritarian, quasi prepper, like "shit's gonna happen, we have to get ready." But I was always kind of quiet in the corner closeting my disability being like, "Well, shit, like, what if I don't have my meds? Or what if I'm too.... What if I can't run away from, you know, the Nazis or the zombies because I have a limp and I walk with a cane? Like, what if?" And that was my first example of this cross disability fantasy space of like, "We're going to escape together and we're not going to let anyone get eaten and it's going to mean really being creative about access stuff." Okay so jump ahead to, right, then I moved to Oakland and then I ran into actual Disability Justice community through Sins Invalid, which is an incredibly important foundational Disability Justice group, and through a lot of friendships I started making with other QTBIPOC disabled folks and my really, really good friend Stacy Park Milbern, who, people should totally know her work. She's incredible. She was one of the best movement organizers that the movement has ever seen. And we met online. And she was living in Fort Bragg, North Carolina with her family on the base because her family's military. And she was a queer southern, working-class, Korean and white, you know, physically disabled organizer from when she was really young. And then she was like, "Okay, I love my family, but I'm literally hiding my gay books in the wall because my mom's Pentecostal." So, yeah, and she's like--I literally realized she tells the story a lot--she's like, "Yeah, like, I realized I hadn't really left the house for a couple months and like, this is gonna be it," and she's like, "I was literally watching Oprah. And Oprah said, 'No one's coming to save you.'" And she was like, okay. She's 21 years old. And then through online, disabled, queer of color community there was this--or she organized--this initiative called To the Other Side of Dreaming where she moved crosscountry with Mia Mingus, who's another queer Korean organizer who was a friend of hers, ad moved to the Bay Area. And so that was around 2010-2011. And then in 2011, what happens but the Fukushima nuclear accident, right, disaster? And we're all on the West Coast--and it's completely ridiculous bullshit, looking back on it now--but all of these Bay Area folks were like, "Oh my God! Radiation!" And some people pointed out, "Look, you know, we're not.... There's...it's a big ocean. The people who really have to worry are in Japan and areas around it, so whatever?" But it was one of those times where we were like, fuck, this is a really big nuclear accident and we are sort of close and it's making us think about disaster. And I remember just going to fucking Berkeley Bowl, which is this big, fancy, organic supermarket and people had bought out all of the burdock all the fucking seaweed. And I was like, "Oh, my God, these people." But out of that, Stacy started having conver--and I and other people who were in our organizing network of disabled, majority BIPOC--were like, "What are we going to as disabled BIPOC if there is an earthquake, fascism, like another big disaster? And Stacy said, really bluntly, she's like, "You know," and she was a power wheelchair user. She used a ventilator. You know, she's like, "Yeah, I am supported by electricity and battery dependent access equipment." And she's like, "Well, I'm going to be really honest, my plan has always been, if something happens, I'm just going to lay down in my bed and die, because I don't think that any emergency services are going to come save me and the power is going to run out in 48 hours. And then we were like, "Okay, that's super real. What if, through our amazing collective access stuff we're doing, we could figure out something else?" And we had this meeting at Arismendy bakery, which for folks who know, is like a worker owned co-op chain, Our friend Remedios worked there. It's wheelchair accessible. We met there after hours. And it was just like, 12-15 of us who started just sitting there and being like, "What are the resources we have? What are the needs we have? And we made this map, which I still have, which I think I shared with you, which is just like, "Apocalypse, South Berkeley/Oakland Map 2011," where we were like, "Okay, you know, when the power goes down, the communication goes down. We're gonna meet at this one traffic circle because people who are wheelchair users can roll up. And we're gonna bury note paper in a mason jar with pens and we're gonna leave notes for each other. But we're also going to agree to meet there the day after at noon." And I was like, okay, my collective house, the first floor is wheelchair accessible. We have solar, we have a landline. And we have a lot of space. So like, let's meet there. And then someone was like, "We've got the one accessible van. And we know, it's only supposed to fit 4 people, but we can fit like 12 in there." And we started.... Like, I just think about that a lot because it's, I think it was a really important moment where it was important...the stuff that we did like that--you know, the actual strategies and the resources we started talking about--but it was also that it was the first time in my life that I was like, "Okay, we're not--not only are we not going to just die alone in our beds, I'm also not going to be the one person who survives. Like, I can actually survive with, and because of, other people. And we're all disabled BIPOC with a couple of disabled white folks. And we can actually collectively strategize around that. And this will be my last leap forward, because I see that you're like, "I want to ask you stuff." So, you know, eight years go by, and in that time we all do an incredible amount of Disability Justice organizing and strategizing. And, you know, in 2019.... And a lot of it started to be around climate disaster on the West Coast. Like, I moved to Seattle in 2015. The wildfires started being really bad a year or two later. A lot of us were involved in mask distributions, just spreading information about smoke safety and survival. And then 2019 was the infamous year where the wildfires came back and Pacific Gas and Electric, in all of its fucking glory, which is the main--for people who don't know--it's the main utility electrical company in Northern California. They announced two days before wildfires were going to really impact the Bay, they were like, "Oh, so we've decided that our strategy is going to be that we're just going to shut down all the power in Northern California.

Margaret  14:52

No one uses that. [Sardonically]

Leah  14:53

No one uses that. And they're like, "Oh, if you have a medical need, call this number, and we'll make sure to leave it on at your house." and Stacey was, "Okay." She had just bought her house, the Disability Justice Culture Club in East Oakland, you know, which was her house but also a community center, de facto community center, that housed a lot of disabled folks of color. And she was like, "I was on the fucking phone for eight hours. Like, I never got through." And she and some comrades started this campaign called Power to Live where they were like.... It started out as, "Okay, we can't save everybody, but we're not going to just lay down and die. What do we do?" So it started out as like, okay, let's identify who has housing that still has power. There's some people in Richmond, there's some people in this neighborhood, but then it also developed into this thing where it was just this amazing crowdsource survivalist resource where it was everything from, she's like, "Here's a number. Here's an email. If you need something, text us, call us, email us. We have a team of eight people. We'll figure it out. If you have something to offer, do it too." And then some of it was that people were sharing everything from generator information, to generator shares, to people in different areas-- like I was in Seattle and we were like, "Okay, we will mail you generators and air purifiers, because it's obviously all sold out in the Bay, but we can get it here and get it to you." The thing that always stands out to me is people being like, "Oh, yeah, here's how you can use dry ice and clay pots to keep your insulin cold if refrigeration goes down."  And there's a lot more I could say about that action and how amazing it was. But for me, when I think about the through line, I'm like, that moment in 2011, when we all got together, and were like, "What do we do?" we were prepping for what we couldn't fully predict, you know, the exact manifestation of eight years later. We're there and we're like, "Okay, there's wildfires, there's smoke, there's no fucking power, and we've not only built our organizing base, we built our relationships with each other so that we can actually trust each other and more or less know how to work together when this shit actually is hitting the fan to create something that's really life giving. Okay, I'll shut up. That was a lot.

Margaret  16:52

Now I have so many questions about all of it.

Leah  16:53

Yeah, ask me all the questions.

Margaret  16:55

Because there's a couple...there's a couple of questions and/or feedback that we get with Live Like, the World is Dying a lot. And some of them are very specifically disability related, and you covered most of them, but I want to highlight some of them. Like a lot of people write and are like, "Well, I rely on the following thing that is provided by civilization. So my plan is to lay down and die." Right? This is a--and I know you've kind of answered it--but I.... I want to ask more. Okay, I'll go through all the things. Okay. So to talk more about what "No One Left Behind," means? And then the other thing that really stands out to me is that, you know, when we were talking, when we were talking about what we were going to talk about on this on this episode, I was saying, okay, we can talk about, you know, making sure that preparedness is inclusive and open and includes disabled folks, or whatever, and you pointed out, really usefully, the, the necessity to reframe it. And I think that the story you just gave is a really beautiful example of this, where it's less about, like, "Hey, make sure to pay attention to the people who need canes," you know, or whatever, right? Like, you know, "make sure you keep track of folks based on disability." And more than like the thing you just described, is the thing that we're always trying to push, which is that you need to make a list of all the resources and needs within your community and then figure out how to meet those needs and instead of assuming that we can't meet those needs, figuring out how to actually do it. And so I love that it's actually like.... It's actually disability justice movements that we should be learning from, I mean, or participating in, depending on our level of ability, or whatever, but I just find that I find both of those things really interesting. And so I wonder if you have more that you want to say about alternatives to laying down and dying, and specifically, to tie into the other thing that I get asked the most or that I get the common feedback is--because we talk a lot about the importance of community for preparedness on this show--a lot of people don't feel like they have community and a lot of people write to be like, "I don't have any friends," or "I don't know any other people like me," or, you know. And so, I guess that's my main question is how do.... [Trails off] Yeah, how do?

Leah  19:22

So how do you make community when you don't have community? Alternatives to lying down and dying? And was there a third one in there?

Margaret  19:28

I was just highlighting how cool it is that y'all sat there and made a list of resources and needs, which is exactly what.... Instead of deciding things are impossible, just being like, "Well, let's just start doing them." You know?

Leah  19:40

And I think.... Okay, so I'll start there. Like I think that like.... You know, Corbit O'Toole, who's like a, you know, Disability Rights Movement veteran and like older Irish, disabled dyke, you know, in Crip Camp, the movie, she's like, "Disabled people live all the time with the knowledge that the society wants thinks we're better off dead," right? Like one...back in the day, you know, there's a--I think they're still active--one of the big Disability Rights direct action organizations was called Not Dead Yet, right? [Margaret Hell Yeahs] I think this is the thing is like I think that sometimes abled people or neurotypical people are not used to sitting down and making the list. And I think that even if disabled people aren't preppers, we're used to being like, "Okay, what do I need? Fuck, I need somebody to help me do my dishes. Oh, I can't bend over. I need to figure out what is the access tool that will allow me to pick up something from the floor when my that goes out? Like, if my attendant doesn't show up, can I have a..." You know, like, my friends always like, "Yeah, I've got a yogurt container by the bed in case my attendant doesn't show up so I can not piss the bed. I can lean over and piss in the yogurt container." Like there's a--and I think that.... God, I mean, there's been so many times over the years where I've done or been a part of doing like Disability Justice 101 and me and Stacy would always talk about crip wisdom and crip innovation and people will just look blank like "What are you talking about? You guys are just a bunch of sad orphans at the telethon." It's not just about making the list, it's also about how disabled disability forces you to be innovative. Like, Stacy would always share this story where she's like, "Yeah," like, she's like "Crip innovation is everything from," she's like, "I save a lot of time sometimes by pretending I can't talk when people come over and want to pray over me. You know, I just act like a mute and they fucking leave and they go on with their life," and she's like, "You know, I realized one day, if I took my sneakers off, I could ramp a step if it's just two steps. I could just put them there and I could roll up." Or I mean, there's a million examples.... Or like, because I think it's about prepping and about making the lists and it's also about whatever you prep for, there's always going to be the X Factor of "Oh, we didn't fucking expect that." And I think that's where a lot of prep falls apart is people have their "Dream Bunker." They're like, "Oh, okay, I know exactly what the threats are going to be." And then of course, it doesn't fucking happen that way. I really hope I can swear on your show.

Margaret  21:46

You can. Don't worry.

Leah  21:47

Great. So, I mean, one example I could give is I'm remembering at, you know, a Sins show when we were in rehearsal, where everyone drove over from Oakland in Patty's wheelchair accessible van, and then the ramp broken wouldn't unfold. So we just were like, alright, who do we know who has welding equipment? Who do we know has lumber? Like, I think we ended up going to a bike repair shop and then they had tools. And then we're like, okay, we'll just bring the rehearsal into the van and do it that way. Like, you have to be innovative. And that's a muscle that I think society doesn't teach you to flex and that often, I think that even people who.... I think there can be a lot of eugenics in prep, you know, whether people are overtly fascist or not, there's a real belief of like, "Oh, only the strong and smart," --which looks a certain way-- "survive," and that "We should use rational thinking to make it all work out." And I think a lot of crip intelligence or wisdom is actually knowing that shit can go sideways 48 different ways and you have to adapt. And you have to just kind of be like, "Well, let's try this." So I think that's one thing. And I think, you know, one thing I'll say is, yeah, just speaking to kind of the reframing we were talking about, I think it's less like, "Oh, remember the people with canes," but, I mean, that's good, but also knowing that we're already doing it and that abled people actually have a shit ton to learn from us. But also, I mean, something.... I mean, the title of my last book is "The Future is Disabled," and it comes from something--it's not unique thinking to me--it's something that a lot of disabled people have been thinking and saying throughout the pandemic is that we were already at like a 30% disabled world minimum and we're pretty close--we're probably at majority disabled right now. Because what, 2% of the world didn't get Covid? Like, how many people have Long Covid? How many people have complex PTSD? We're all sick, crazy, and, you know, needing access equipment. Disability is not out there. It's in here. Like there's no such thing as doing prep that's like, "Oh, only the three Uber Mensch are gonna survive." Like fuck that. And that actually--I mean, sorry, this might be a side note, but a lot of people have probably seen The Last of Us. And I'm just gonna SPOILER ALERT it. You know that famous episode three of those two gay bear preppers in love? Yeah, I loved a lot about it. I was so pissed at the ending, which I'm just going to spoil. So you know, the more artsy, non-prep guy....[interrupted]

Margaret  21:47

Yeah, they don't survive.

Leah  22:47

Well, no, but like, not only did they not survive but one of them gets chronically ill. And I was just like, grinding my teeth because it's like, "Oh, he's in a wheelchair. Oh, his hand tremors." And then they end up deciding to both kill themselves rather than do anything else. And I was so furious at it because I was like, these are two people who are so innovative. They have figured out all kinds of problem solving. They have an entire small city for themselves. And it's all like, "Oh, no, he can't get up the stairs." And I'm like, really? There was no accessible ranch house you couldn't of fucking moved to?

Margaret  24:38

Or like build a bedroom on the fucking ground floor.

Leah  24:40

Or youcouldn't get meds? You couldn't? I mean, when his hand was shaking, it was like, "Oh, it's so sad. He's being fed." I'm like, there's tons.... First of all, it doesn't suck to be fed. A lot of things that seem like a fate worse than death are not when you're in them. And also, there's like all kinds of adaptive utensils that they could have fucking raided from medical supply if he wants to feed himself. Or I'm sorry, there's no cans of Ensure? They absolutely have power. They couldn't have made smoothies? Like, what the fuck is this? But beyond that--and I think that a lot of people who have talked about that episode did, I think, have some good analysis of it where, you know, the whole way they set up their prep was they were like, "Oh, it's just the two of us," and the one super prepper guy was like, "I don't even want friends to come over." And the other guy was like, "Hey, actually, we need to make alliances because there's things they have that we don't. And we also need more than just the two of us because I love you, but I'm gonna kill you." And I think that's something to think about is really moving away from the idea that just your little you know, the utopic queer rural community that so many fucking city queers fantasize about or, you know, lover are going to be enough, because it's not. So that actually leads me to, "I don't have community. Where the fuck do I get it?" And I'm like, yeah, that's super real. Right? And I think it's something I actually wrote about in "The Future is Disabled" is that I have people be like--when I write about different crip communities, just even when I talk about stuff on Facebook.... Like my friend, Graham Bach, it's going to be his second year death anniversary in like two weeks, and he was like, you know, white, psychiatric survivor, super poor, amazing sweetheart of a human being, he died.... I mean, he died in his, you know, rent to your income apartment because he was really afraid to go to the hospital and he had cardiac stuff going on. And he was an anarchist, he was amazing, kind, complicated human being. And, I was writing about, like.... I'm going to tell the story and there's a couple things I want to pull out of it. So I was writing about meeting Graham when I was in my early 20s through radical Mad people community, and somebody was reading it and was like "That sounds so great." And I was like, "Yeah, it wasn't utopic. Like, I had to yell back at Graham because he would scream at me and I'd be like, "Shut the fuck up!" Like, there was so many fights. There was so much racism. There were so many older white cis dudes who had electroshock who were jerky or gross, you know? And I guess that was the thing is, I was like, they're like, "Well, how did you find each other?" And I was like, it wasn't perfect. Also, it was very analog working class. Like my friend Lilith Finkler, who is an amazing Moroccan, Jewish, working-class queer femme psych survivor, she would just go to the donut shop where everybody poor hung out and would talk to everybody who wass there who wass crazy who no one wanted to talk to and be like, "Hey, do you want to come hang out at this meeting at the fucking legal clinic? We have a room. We have a snack plate. I'll give you tokens. Let's organize." So I think that's the first thing is that it's not--and I don't mean this in a finger-wagging way--it's not automatic. And also, one of the really big ways that community is often ableist, and that a lot of us get cut out from it, is that a lot of us who need it the most are not particularly easy to love in ableist neurotypical worldview. It's like we're cranky, we're wounded, we're in a bad mood, we're weird. So a lot of the time, I think it's thinking about, first of all, what's one step, one move you can take towards it. Like, can you make one fucking acquaintance and build it. And really think about what it would mean to build some kind of relationship. I think the other thing that I really want to highlight is that a lot of the communities that I see that keep each other alive, that I'm lucky to have been a part of making and being supported by in disabled community, they're not static and they're not perfect. Like, I have networks with people who piss me the fuck off and who, you know, I've sent 20 bucks to people who I'm just like, "I really don't like you, but I can see that you really don't have food," you know, and we're not going to be friends and we're not going to like each other, but I don't want you to die. And that's not...I mean, it's bigger.... There's also people who I'm like, "Okay, you're my ex-abuser. I'm not gonna give you $5. Someone else can give you $5.

Margaret  28:42

There's this person who puts a lot of their effort into talking shit on me on the internet and I...they're also broke and have a lot of chronic health issues and I send them money every month. And every now and then I'm like, could this like...could you stop talking shit now?

Leah  29:03

I think this is the thing sometimes is like, hey, how about this is the deal, like maybe just say "Thank you," or maybe just talk shit even like 20% less? Because you know, I'm really doing we keep us safe here. I just really want a "thank you."

Margaret  29:16

I don't want you to die. Like, I don't want you to starve to death, but I really wish you would be a little bit more open minded to people having different opinions on yours.

Leah  29:26

Oh yeah, nuance, right? Yeah, it'd be fucking nice.

Margaret  29:29

God forbid. Anyway.

Leah  29:31

No, it's good. I guess my TLDR would be to start where you are and start with "what's one thing you can do? What's one person you can reach out to?" And I think, you know, I don't know if this is true for everyone who reaches out to you and it's like, "Well, I don't have anybody," but I think that social media and online connectivity is a real double-edged sword because for some of us who are isolated, it can create both online communities that can sometimes become in-real-life community and, either way, can be sources of some community or support. But I think.... I mean, you know, I'm a Generation X'er and I've just seen social media get more and more chokehold and just turn into fucking the panopticon meets a mall, you know? [Margaret laughs] And I think it's hard because 12 years ago I was part of really early online disabled spaces, which were great because so many people were like, "Well, I'm so isolated in my small town or in my city," or "I can't leave bed, but this is great. I'm meeting with other people and we're building these connections and it's actually more accessible for me to be real about my stuff from like my bed with a heating pad." And now I just think it's so chokeholded that it's hard for us to find each other. So it's much more common for people to be like, "Wow, I'm seeing all these people who have millions of followers and a shiny brand and I just feel like even more of an isolated loser." And then at the same time, I think people are like, "Well, how did people meet each other before this?" And I was like, "Yeah, like, you go to the coffee shop or the donut shop. You put up a flier. You go to the library. You like, I don't know. I mean, I just remember people I met on the food stamps line, you know, when we got there at six in the morning. And not everything's gonna stick, but maybe something sticks. And I also think about like, I'm going back to 13 years ago in early Disability Justice community spaces where--I mean, I think back to [untranslatable] when I went back to Toronto--which, yeah, big city--but I remember I had so many people come to me and be like, "You're..."--because I was starting to be more out about disability, cuz I was like, "I'm in the Bay and there's these wild people who talk about it and they're not all white people." and so I have so many, especially Black and brown disabled femmes be like, "Hi, you don't really know me, but I have fibromyalgia too," or "I have Lupus too. And like, no one I know talks about that. How do you do it?" And I'm specifically thinking about this time that this person I'm no longer in touch with--but we used to be friends--who's like, you know, queer, brown nonbinary person was like, "Let's just have a meet up of other chronically ill femmes of color," which is how we were identifying a time, and it was four of us, four heating pads, a bottle of Advil, and just very tentatively starting to share things about our lives. And I was like, "Yeah, that was four people." But a lot of that hang out then rippled outward. And it was like, I think it's also important to be like, it's scary to build community. Some tools I want to shut out like, so Mia Mingus, who I mentioned before, she has a lot of really great writing on her blog Leaving Evidence and she created this tool a long time ago now--that some people might be familiar with but for folks who aren't--it's, you know, it's her tool that she calls Pod Mapping. And she actually created it as part of a collective she founded called the Bay Area Transformative Justice Collective that was working on doing transformative justice interventions into intimate violence, specifically childhood sexual abuse a lot of the time, and she had this framework that I find really helpful. She's like, "A lot of..." she was talking about in community accountability, transformative justice spaces and she made a really good point where she's like, "Sometimes we talk about like, 'Yeah, bring in the community. Like, everyone has a community.'" And she's like, "Most people don't have a fucking community, let alone one that can interview in childhood sexual abuse." So she created this tool where she's like, "Let's broaden the idea of what community is." Like, maybe it's that one cousin, that you only talk to once a year, but you could call them in a jam, or it's this hotline, or it is like, yeah, they're a weird church, but you really like their food banks. She's like, "You have to really bring in.... Like, start where you are and do the resource mapping we were talking about" I really liked that tool a lot as a place for people who are like, "What's my community?" because I think it's a big word and really being like, "What does that even mean to me?" and like, "What's one place that can start building it?" And I also want to shout out, Rebel Sydney Black, who's a friend of mine who passed this June, at the beginning of the pandemic, he created this tool called Pod Mapping for Mutual Aid that was specifically aimed at disabled folks who were trying to pod map during Covid--and we can provide the link and stuff like that--but I would say that those are two places to start and then I want to get to alternatives to lying down and dying. And then I'll stop.

Margaret  34:04

Okay, wait, wait, before we get to that I want to talk more about the building community thing.

Leah  34:08

Yeah, please.

Margaret  34:09

I think you brought up a lot of really interesting points. And one of the things that I really like about it, you know, talking about having like...you're broadening the idea of what counts as community, which I think is really useful. And one of the things I realized is that a lot of times when I was younger, I was like, "Y'all say 'community' and you just mean the people that you like," right? And that didn't make any sense to me. Community seems like the people where you have a shared interest, whether the shared interest is you live on the same block, or whether the shared interest is an identity, or whether the shared interest is an interest that you're trying to see change, or whatever. It doesn't mean people you like. It's a different thing. Friends are the people I like, right? Well, mostly. I'm just kidding. I love all of you. I mean, there's a lot of people I love that I don't always like. Anyway, so I don't know, and so I think that one of the things that stuck out with me about what you're gonna say and I want to highlight is the idea that--or maybe I'm misreading it--but like "pick issue to work" around seems like a good useful way. Especially if you struggle to just have friends, right? That's not like the thing that you're good at. But maybe there's a thing that you want to work on? Or having that meetup where it's like, oh, all the following people who have the following things in common, let's meet up and talk about it. Or honestly, activism is a really good way to meet people and work closely with people about things. And it doesn't necessarily have to mean these are now your friends. But they can be people where you rely on each other. And that doesn't have to be the same. I think about it a lot because I live in a fairly isolated and rural environment where there's not a lot of people around me who are culturally.... Whatever, there's not a lot of out, queer people where I live. There's not a lot of punks. And I'm like, that's okay. I talk to my actual neighbors instead. I mean, some of them, not all of them, but most of them, you know, they're who I would rely on in a crisis, because they're right there. It doesn't mean that we have the same ideas about a lot of stuff, you know? But we have similar ideas, like, "Let's not die," right? And so that's enough sometimes. Anyway, I just wanted to....

Leah  36:12

No, I really appreciate it. And I mean that makes me kind of think about, when you were talking, I was like, yeah, you know, there's friends, there's communities, and then there's survival networks, which can include contacts, right? Because I just think about what would I do right now, if some should happened? And I was like, I've got long distance kin and long term friendships and relationships ofvarious kinds and I also have--because I moved to where I live, which is like semi-rural, but definitely more rural than where I've lived before--and I'm just like, yeah, I have a small number of friends. But there's like people who I know who I can...who are neighbors who like, maybe we don't know a shit ton about each other but I could be like, "Hey, this thing?" or "Hey, do you have water?" or, "Hey, let's do this." I think it's a lot about thinking about what are your goals? Is your goal intimacy? Is your goal survival? Is your goal friendship? Because you need different levels of trust and commonality depending on those things, right? I also think, and this is the thing too, I think something.... I think a lot of times because I've had people be like, "Well, I don't have community," also, I've heard that. And I think that a lot of times the context, I hear it in is people being like, "Well, I have care needs, but I don't have any community." So then there's also the really big thorny question of "need" and like being cared for is actually very complicated. It's very risky. It's very vulnerable. It's not safe a lot of the time. It may feel a lot easier to just be like, "I don't have any fucking needs." And so there's a lot, I will just say that there's a lot of unpacking that needs to do around like, "What would I need to be cared for? What are my lower risk needs that I need help with? What are my higher risk needs?" right? Like, there's people who I can.... There's some needs I have where I'm like, I don't need to trust you super, super deep politically or on an intimate level to let you do that. There are certain needs where I'm like, that's only going to be people where we've really built a lot of fucking trust because if this goes sideways you could really stuck with me. Right? And I think that when you're starting from nowhere, I think often where people get stuck is like, "Where I am feels like I have nobody and nothing. And I want to get to like the thing I've read about in your topic science fiction, where you know, it's Star Hawk and everybody loves each other. And how the fuck do I get from A to B." And I think the solution is like, yeah, you're not gonna get to fucking "Fifth Sacred Thing" right away--and that book is complicated.

Margaret  38:29

Yeah, It was very influential on my early....

Leah  38:31

Oh yeah, when I was 18, I just wanted to fucking move there. And now I'm like, "Oh God, this is embarrassing. There's some shit in here." I'm like, "Wow, everybody's mixed race, but everyone's Black parents are dead." Wow. Cool. Nobody really thinks about race. I'm like, I'm gonna throw up. And like, you know, BDSM is just violent....Okay, sorry. We're not going to get into that.

Margaret  38:47

Oh my God, I don't remember that part.

Leah  38:49

Oh, yeah. No, where it's so violent. Like, "We're just loving." And I wrote a really no passion paper for school, because we actually had to read it in a college class I was in, and I was like, "Why are they not into leather sexuality?" And my professor was like, "Okay, 18 year old..." but yeah.

Margaret  39:04

I mean, legit. You 18 year old self had a  legitimate critique.

Margaret  39:08

Yeah.

Leah  39:08

Yeah, no,  there's a lot there. But, um, but jumping back, I guess it's just like, you know.... And I think this feels like disabled wisdom too, it's like, what can you do with the spoons or the capacity you have? Like, what's one move you can make that small? And then can you build on that? Yeah, but can I talk about alternatives to lying down and dying?

Leah  39:28

Yeah. Well, I think...I mean, this is the thing, is like, I'm a survivalist, but I'm not like anti-civilization in the ways that some people are. Like, I want meds, you know? And I think that's something that other crips I know talk about a lot, which is like, you know, we're really against this way that some people, including some people who would like align themselves with like Healing Justice who are like "We're like, oh, yeah, we just have to go back before colonialism and capitalism, and just everyone lived on herbs and it was great." and I was like, "Nah, bitch, I need surgery and meds." Like I want it all. Like, I love non-Western pre-colonial traditional healing. Absolutely. And I've had friends who died because they didn't get their surgeries on time. Like my friend LL died because nobody would give him a fucking kidney because they said he was too fat. And I'm just like, my good future involves.... I mean, and he's one of millions right? So like, my good future involves that we have surgical suites. And I'm just like, you know, honestly, also, a lot of times that worldview just seems so white to me, because I'm just like, listen, a lot of like, global south places figure out how to have field hospitals, right, in really dire and low-resource situations. So I'm sorry....

Margaret  40:40

I mean, only Europoe's ever figured out surgery. No one else has done surgery until Europe showed up. [Said sarcastically implying the opposite]

Leah  40:45

Yeah, not fucking ever. [Also said sarcastically]

Margaret  40:46

Said the people who are like, "bite down stick and I'll saw your arm off."

Leah  40:49

Yeah, so I mean, I guess one thing I would just say is like, I would say that and I would say like, you know, really...I want to like lift up and encourage people to look at--and they can be hard to find--but look at cultures, look at organizing initiatives where people were like, "We can have our own ambulance, we can have our own like..." And when that's not there, to think about what it would mean to have medical care after the apocalypse, right? What would it mean to make hormones, make drugs, synthesize chemicals, and it's not impossible. I think that we're still in the in between of like, okay, we gotta figure out how to do that. But, um, you know, I'm thinking about, Ejeris Dixon, who's my friend and comrade, and, you know, we co-edited "Beyond Survival" together, which is a book we wrote that came out right at the beginning of the pandemic about stories and strategies from how people are actually trying to create safety without the cops. Ejeris always talks about how they were like, "Yeah, like, in Louisiana, you know, in the South, you know, like in the 50s, and 60s, and before I believe, there were all kinds of Black run ambulance and 911 services," because regular 911 wouldn't come to Black communities. Right? And they, I mean, something that I've heard them say a lot over the years is like, "We don't have the people's ambulance yet. But we could." And then it makes me also jump to some friends of mine who were in Seattle who were really active as street medic crew during the rebellions after George George Floyd was murdered by the police in, you know, 2020 in the summer, and specifically in, as some people remember, Seattle managed to have 16 square blocks break off from the city for a while, CHOP, Capitol Hill Organized Front. And so what people don't know is that the cops were like, "Okay, fuck you. We're not going to...If there's any 911 ambulance calls, we're not going to fucking let anyone go in there." So the street medic crew had to deal with a lot of really intense situations. And then after that, like a lot of us folks, like some folks were already nurses or EMTs and a lot of folks who were involved went to nursing school or EMT school and we're like--and I don't know where it's at now--but they were like, "We want to create,"--because right now in Seattle, there's, if somebody is having a crisis on the street, like a medical or a mental health crisis or an altered state crisis, there's no non-911 crisis response that you can call. There's either you go down the stairs to talk to somebody or there's the cops, right. And they were like, "We can get a van. We can get medical equipment from eBay." And you know, I don't know where they're at with that, but they were really organizing around like, "Yeah, we could get a defibrillator. We could get oxygen. We could get blood pressure cuffs. We could get fucking..." you know? And I think that that shit gets complicated in terms of insurance and regulation and the State and the medical industrial complex, but I want us to keep thinking about that. I also, and then I'll wrap up because we have other questions to get to, but it also makes me think about, I mean, I don't know if folks are familiar with Gretchen Felker Martin's amazing science fiction book "Manhunt," right, which is about....

Margaret  43:50

I haven't read it yet.

Leah  43:52

It's so fucking good. Okay, so I won't give it away. But just for people who don't know, I'd say it's the one kind of gender sci-fi book where "Oh, a virus, you know, affects people with certain chromosomes or certain that dih-dah-dug that's not TERFy  because it's a book that, you know, she's trans, and it's a book that centers trans women and nonbinary communities and there's like one or two trans masculine characters. But the two main trans femme, like trans women characters in the book, they're like, they have to, they're like, "Yeah, like, we're going on raids to get, you know, hormones, and, you know, different, like chemical drugs we need. And we're also figuring out how to synthesize them from herbs and different substances." And it's not easy. It's a struggle. But  there are organized communities of trans women and allies that are fighting to do it. And I'm just like, yeah, and I mean, it's an amazingly well written book, and she's incredible, and I fucking loved it. And it's just beautifully written and really just--sorry, I won't gush too much but go read it, it's incredible--I just really also appreciated it because she was like, "Yeah, of course we're gonna get our hormones after the end of the world. Like of course it's possible." And I will also.... I have some criticisms of the ableism in it, but M.E. O'Brien and--fuck I'm forgetting the second author's name, but every you know, "Everything For Everyone," that book. I appreciated how in the good future society, they're like, "Our priority is making sure that insulin and chemical drugs and hormones are accessible and free to everybody." And I was like, I guess I would just push people towards there are ways of imagining the future where we can defeat capitalism but still have medical care of all kinds. We can have Reiki and acupuncture and we can also hormone surgery and transplants. And we might be doing it better because it's not controlled by fucking corporations and assholes. Sorry, that's my soapbox. Um, okay. I will say in terms of people being like, "That's really nice. But what about me?" I would be like, you know, I mean, right now in the war on trans America, there are so many people already who are like, "Yeah, I'm stockpiling meds. I like doing meds trading." I would say it goes back to what we started about, which is like, "Okay, what are your needs? What are the things that you're worried will not be there if the world ends?" Right? And we also need to recognize that the world's already ending and it's ended for some of us a bunch of times already. But I would be like, make that list and then really be like, "Alright, how do I get it?" You know, and if I can't specifically get it, are there like backups that I can get? And it may be stuff that you can research on your own. It also might be stuff where it's like, "Okay, are there trans [untranslatable], disability justice organizations, nationally, globally, locally, that you can hit up and be like, "What are folks thoughts about this? Are there ways that we can resource share?" Because I think it's about pills. I think it's also about durable medical equipment. So in terms of stuff that requires power to live, I think about generators and I think about generator shares. And I think about things like...there's a story when Hurricane Sandy hit New York 10 years ago, there were a whole bunch of us where...there's a guy Nick who's in community who, physically disabled guy, 13th floor, accessible apartment, you know, the lights went out, you know, really dependent on electricity to change out the batteries on his ventilator. There's a whole crew of disabled folks, like people walked up and down those fucking stairs every eight hours to take the spent batteries, figured out, "Hey, you know, what still has power, the fucking fire department." People were walking down recharging the batteries every eight hours. And it was allies, it was ambulatory, it was disabled people who could walk. It was fucking hard. But people were like, we're not.... Nick and his friends were like, "We're not just going to die. We're needed." So I wanna shoutout that and just for possibility modeling, I really want to, one other place I want to shout out, is an org that used to be known as Portlight but was now known as the Center for Inclusive Disaster Strategies, which is a disabled-led organization that is about like, yeah, when there's a climate or other disaster, they figure out ways of getting like accessible fucking evacuation methods to places because they know...we know, there's millions of examples of people who are just left to die in nursing homes or like, "Oops, the bus doesn't have a ramp," or, you know, I really want to name that during Katrina, some people might know about, you know, the situation with the nursing home that was there were a lot of folks who were wheelchair users or had high care needs were fucking killed by medical staff because the medical staff were like, "We're gonna actually euthanize these folks without their knowledge or consent." [Margaret exclaims] Yeah, no, there was actually a movie on HBO about it I think semi recently. Because "that's easier than figuring out how to fucking get people in the medivac ," right? Yeah, and so the Partnership for Inclusive Disaster Strategies, I'm still getting to know them, but I have friends who are involved and they're like, "Yeah, we're aware this is an issue." So yeah, let's work with the fucking Cajun fucking Navy to like make sure that you can get folks with different bodies onto evac boats. Like let's figure out what disabled survival looks like. And I will just say, and this is the last thing I swear, for me, I mean, we all know water is important. Like, I can't lift 54 pounds. Guess what? So can't--which is, you know, a seven gallon right, like a five or seven gallon whatever--I'm just like, yeah, so I can actually have smaller jugs of water that I can lift.  So yeah, I have a bug out plan, but I also have a real Shelter in Place plan because I'm just like, yeah, my apartment's accessible for me. So yeah, I got a shit ton of water right here and I'll be good for a while. And I also have a plan B for.... Okay, there's...I've got my filtration equipment, so when that runs out, I'm close to some water sources where I can go and I can filter that shit. And that's me thinking about what works for my body. Think about what works for yours and then plan out from that. Okay, I'll really stop talking now.

Margaret  49:44

No, no, but there's so much there. Even just like to go to the weight of water, right? The thing that I ran across that I'm like--I'm reasonably able-bodied and such like that, right--but I live alone and so obviously there's this specific thing where like.... Well, one, I mean, abledness is always a temporary position....

Leah  50:04

Yeah, you're going to get disabled, you're gonna get sick and disabled.

Margaret  50:07

Like it literally happens to--unless you, I don't know, die very quickly, very suddenly, probably violently, you're gonna go through a period of disability in your life, you know? And so my argument is that machismo is anti-prepping. And one of the ways that I would say is that like, there's now, I think.... Okay, so cement bags, they come in 50 pound bags traditionally, right? But now there's more and more, I think, there seems to be more and more 30 pound bags, right? And I used to be like, "Oh, whatever, I can lift a 50 pound bag. So I should carry the 50 pound bag." And then I'm like, well, it was not a helpful way to look at it. It is far better for me to just have 30 pound bags of cement because they're easier to carry and I'll get tired less. And I, you know, at the time that I was pouring these bags, I lived up a hill about probably the equivalent of a seven storey walk up to this cabin that I was building, right. And so I had to carry each and every one. It was way nicer that I carry 30 pound bags. And if your preparedness doesn't include the fact that your level of ability will change in different situations, then it's not very good preparedness. And and so like, I don't know, I mean, like most of my water jugs are four or five gallon jugs. I use jerry cans. I think most of them are five gallon. And I hate the six gallon ones and the seven gallon ones. They're just heavy and annoying. And it's like I can give lift them but there's no reason why I should. Unless I'm specifically working on lifting weights. And then the other thing that you talked about that I really think about a lot, you know, is this idea, of does your version of disaster mean that every doctor dies? Or like, does your version of disaster mean everyone who's ever made insulin dies? Like, it's possible. Sure, you could have 90...if almost everyone on Earth dies, then everything is a little different. But most disasters don't actually..... Most disasters destroy ways of living and large numbers of people, but not the majority of people write. Most people survive most disasters. And, people are like, "Well, our organizational systems are what produce insulin," and like, no, people produce insulin and they use organizational systems with which to do it. But different organizational systems can also produce insulin. Like different organizational systems can use the same infrastructure sometimes and make the things that we rely on. And it came up with this like whole thing where people on the internet were like, "Ah, if you're an anarchist, you hate disabled people because in anarchy, you can't have insulin,"

Leah  50:28

That's gross.

Margaret  52:40

It is a complete misunderstanding of anarchism. It is not a lack of organization, it is a different type of organization.

Leah  52:46

Anarchy is responsibility.

Margaret  52:48

Yes, totally.

Leah  52:50

Sorry, sorry.

Margaret  52:52

That's why people don't like it. People are afraid of it because they actually have to.... It's the accepting no one is coming to save us except us. You know? No, I love that way of framing and it also annoys anarchists when you tell them this too.

Leah  53:07

Okay, well, I mean, you know, so I worked at Modern Times books, which was, you know, is no longer around, but was a long time anarchists and anti authoritarian radical bookstore in the Bay. And we had the only public toilet in all of the Mission because everybody else was like, "No, you gotta buy something." and in my interview, they're like, "How will you make the store better?" And I was like, "I will make the bathroom not smell horrible." Because, you know, it was just like a bust, everyone was pissing in there. And so I taped up a sign that said "Anarchy is responsibility. If you spray the fucking toilet with urine, please wipe it up. Together we can have a toilet." And somebody called me out and was like, "That's capitalist." And I was like, "No, just wipe your piss up or we're not gonna make the revolution. Like, come on." But yeah, they got pissed at me about that. [Both laugh] But yeah, I mean, I think that's a really good point. And it's like, you know, I mean, I think that it does point to, you know, I think a structural problem in a lot of our movements, which is like, yeah, we don't we need more people who know some basics of chemistry and can synthesize stuff. Like, that's, you know, we need more people who've gone to some kind of science or engineering school who can figure out how sewage works and how you synthesize insulin and how you synthesize hormones and like, basic surgery. And I think there's a lot of hopefulness because I--maybe it's just the folks I hang out with--but I have a fair number of friends who are like, "Yeah, I'm gonna be a nurse practitioner. I can give you an abortion. I can sew up your wound. I can help you figure out this thing." And I'd love for there to be more of us who can go to PA school or know more than that. And I also think, yeah, we need to.... I mean, of course it's a longer range strategy but it's like yeah, some chemistry school would be great. And, you know, recruiting folks who know some STEM stuff and who are like, "Yep, we can build it. We have the technology," I think is super important. And also but I really...thank you for saying like "What in your idea of disaster do all the doctors die? because, no, they're not going to fucking all die. It is a problem that, you know, under capitalism and ableist, racist, white supremacist, sexist, cis sexist society, you know, medical school is really expensive and hard to get through and will fucking make you half dead. But it doesn't mean there aren't some progressive PAs and doctors out there who are like, "Yeah, like we can figure it out." And it does not mean that the entire national medical stock is going to disappear overnight. It's not. Like it's really not. There's a lot of insulin out there. It may not seem like it because it's hard to get because it's expensive, right? There's a shit ton of meds out there. And it's not all going to run out right away.

Margaret  55:37

And it does have a impressive shelf life overall. The dosages will change as it gets older because it becomes less effective, but it is hard to get, but it's actually more stockpile-able level than most disposable, or consumable [replacing the word disposable], goods. So there's one more big topic that I really want to talk to you about. Originally we're gonna do the whole first half about it. And basically, I want to talk about the state of Covid and how it ties into disability and preparedness and I want to talk about how we as both as society and then also as movements are and are not handling Covid in responsible ways and where we're at with it now.

Leah  56:20

Yeah, well, sometimes I think it's the crips that are gonna inherit the Carth because, you know, I mean, part of the "anarchy is responsibility," thing is, you know what's responsibility and anarchy? Public fucking health. You know, and it's the irony where, you know.... So, you know, as of this recording, the CDC and a ASIP [American Society for Investigative Pathology] just authorized the newest variation of the boosters and the Missouri--let me find this because it was just so fucking horrible--and I was like, "Is this real?" and they were like, "Yeah." So yeah, Triangle Mask Brigade [Bloc], which is like a Durham, Raleigh, and Chapel Hill mask, you know, just masc disto and Covid activist group, they had posted.... Hold on, the Missouri Department of Health, their Instagram literally posted a thing that was like "Covid vaccines will be available in Missouri soon." And then they say, I shit you now, "If you're into that sort of thing. If not, just keep scrolling." And I was like, "This can't be real." And they were like, "No it's fucking real. It's literal." And they're like.... I was screaming at the person who's listerally an epidemiologist, but who's, you know, a eugenisist and fascy. And, okay, so what do I mean by this? What I mean is, is that anarchy's responsibility and that everyone I know who's involved in disabled organizing, like Covid safety organizing, that's like.... I'm like, shit, I hate to look like a tin hatter. But I'm just like, 'The CDC has abandoned us," you know. It sucks. They're just like, "Oh, what Covid?" What Surge? What data? We've made it so there is none. Oh, everyone's sick. But oh, what could that be?" It is the rest of us who are like, it sucks that we've had to become citizen scientists and public health people with no budget to be like, "Wear a mask. Use, you know, nasal spray. Use, you know, use CPC mouthwash. Here's what you do when you get sick, like, here's..." you know, all of that. But we are the ones who are working towards collective safety and keeping ourselves and each other safe. I don't know if I'm answering your question. I just basically I'm just like, TLDR, those of us who are Covid conscious and who are not just continuing to keep ourselves safe individually but who are like putting out tools, are going to be the ones that save all of us that end up getting saved, as much as possible. And I guess something else say is, I was just talking to my friend Gabe, who's a musician, and he's got an album release in a week or two in Seattle and I'm actually going to be there because I was really excited to go and celebrate him because it's his first album in a while and I was like, "Hey, what's your Covid safety plan." and he's like, "I'm so glad to talk about this." He's like, you know, "It's in a bar. So I can make it mass required. But then people will take them off to eat or drink. So I don't know what to do." And I was like, "Great, but if you actually really model it and if you have masks that people can have at the door and if we get some air purifiers--cuz he was like, there's just not good ventilation--I was like, "That will do a huge amount of risk reduction. And like, I just have to keep reminding people and being like, 'Hey, yeah, take it off briefly to fucking drink your drink, but put it back on.'" And he was like, "God, I'm so glad to talk to you about this," because he's like, you know, "The last two times I got Covid were when I was performing at a show and I don't want anyone to get Covid and I don't want to get it for the fourth time or whatever." And so then I was like, "Hey, there's this group Clean Air Club," which some people might know that's out of Chicago that's a really amazing--I don't even know if their a collective, like it might just be one person--but they started out being like, "Hey," for musicians and people who are trying to do in person events, "We will loan you air purifiers."

Margaret  57:10

That's cool.

Leah  57:12

Right? And they're just like, "And we'll talk you through how many do you need for X number of square feet and here's the things you can do. And then they also, I think I first ran into them because they put out a really good safety guide for like, "Are you flying? Like, here's some ways to reduce myth and reduce risks." So like N95 vs KN95. But they're also the first place that was like, "Hey, people don't talk enough about nasal sprays, or they only know about Enovid," which is very effective, but is Israeli and it's expensive. So between those two things, a lot of people won't buy it. But they're like, "Here's all these different kinds that actually form a barrier in your nose so if you do get exposed to COVID, it can't really stick to your....

Margaret  1:00:25

I've never even heard of this before.

Leah  1:00:26

I will send you the link. I just had a direct exposure three weeks ago. I mean, I think we were talking because I still don't know if I had Covid or not, because.... But I was in Philly and I was just like, yep, you know, I know it's dense. I know, there's a lot of people around. I hung out with a friend outside. I sprayed myself beforehand. I sprayed myself after. I went and hung out with a friend for 24 hours. And then the day after that, my friend who I hung out with outside was like, "I'm so sorry, I tested negative right before I saw you, but I just tested positive," and I was having symptoms. And I was like--anyway, I don't want to go too much into my own story--but like, Clean Air.... I guess why I was bringing this up is that Clean Air Club is one of many examples I know where they're sharing knowledge of like, "Here's how we do harm reduction. Here's how we create safer spaces. Here's how we use layers of protection," which is the terminology People's CDC has put out there, which is like masking, air purifiers, CPC mouthwash after exposures, nasal sprays, antivirals, opening the windows. And then I think it's also the conversations we have because like, when I talked to Gabe, I was...he was like, "I really wanted to do it, but I was just stuck." And he needed the conversation we had, where I was like, "Hey, what about we try this? What about we try that? It's not going to be like 100% no one will have Covid situation, but we can reduce the risk so much and we can still together." It's not either, "We all never leave our houses or see anyone ever again," or, you know, we just raw dog the air and cough all over each other. There's a lot of shit we can do in the middle to reduce risk. And I think that that's going to be stuff...that's part of my prep. And like, I feel like for a lot of us, I use the term the Great Forgetting, which is what I feel like, you know, the State and governments and, you know, the medical Industrial complex has pushed under Capitalism, especially in the last year to be like, "What Covid? There's no Covid Let's take away data. Oh, all you have is wastewater and what's that even? Like, no one has Covid." There's just been such an encouragement of like, "See no evil, smell, no Covid, everyone  go back to work." And then there's all the rest of us who are like, "No, it's still here. We're tracking surges. Here's how we're going to keep ourselves safe as communities." I feel like I'm rambling a little bit, but I guess the point I'm getting to is that a lot of us in disabled and Covid activist community have been like, eventually, I would love to believe that there's like effective vaccines that actually prevent the virus, not just, you know, make it suck less. I really hope for Covid PrEP, like a PrEP equivalent or like a protease inhibitor equivalent for HIV. I hope for, you know, like post-exposure stuff where you can just spray shit in your nostrils and it kills on 100%. Until then, we're going to have to keep creating harm reduction, layer protection strategies. And a lot of us, I feel like I keep almost saying this and then it feels like, tricky to say it, but I'm like a lot of us are like, "Yeah, it's kind of a forever pandemic. It's not, 'It's over.'" It's like it's not over yet. So part of the apocalypse of now is like, yeah, we're living in a pandemic in a plague that continues. How do we figure out how to socialize with each other, not get Covid, not give ourselves Covid for the first or the fifth time, and build strong communities that are about not dying, and not getting exposed to a disease that can have such disabling effects, right? And it is about community safety versus individualism.

Margaret  1:03:47

No, I really like this because one of the things that I've been thinking about more and more is, I saw it somewhere I don't remember exactly, but it was that we need to mourn a world that doesn't exist anymore. [Leah affirms] The pre-covid world does not exist. And it's kind of a "grow the fuck up," to the people who are like, "Well, I want to just go back to doing these things." And I'm like, well, you just can't. And I'm sorry. Now there's other things.... I'm gonna be like, "No more live music." Like, I think that what you're talking about, this risk management structure is what to do. It's like, well, if you want to go back to doing these things, we need to be learning HVAC, like speaking of learning....

Leah  1:04:28

Seriously, like, one of my best friend's is like a radical Palestinian HVAC trans engineer. They're not a nurse practitioner, but they were like, "I went into HVAC," and I was like, "Great, we're gonna need you. We need you right now. I'm so happy you have those skills."

Margaret  1:04:42

Because it's like, this is just going to keep happening. And one of the things I think about is like, I was thinking about how like, you know, I travel a lot and I go to a lot of different scenes and some scenes I see a larger number of people who are like visibly--I don't know the right way to phrase this--wheelchair users and things like that, like people who have mobility needs.

Leah  1:04:59

Disabled.

Margaret  1:05:01

Well, I mean specifically people who are disabled in ways that physical access to space requires certain tool things. And I see a greater percentage of people in some scenes and some other scenes and then I'm like, oh, because you only see someone who needs a wheelchair when you're in a punk venue that's wheelchair accessible. And it's not because there aren't punks who use wheelchairs. But if you think that there's no punks who use wheelchairs, it's because you're going to punk venues that are not wheelchair accessible.

Leah  1:05:32

The self-fulfilling prophecy of access, where it's like, "Well I don't see any disabled people. So we don't need access. And I'm like, we're not here because [emphasis on this word] your space isn't accessible, you right jackass, right?

Margaret  1:05:44

And I'm seeing this increasingly also around mask use. And like, you know, because if you're like, "Oh, none of me and my friends, like everyone who comes to this thing, like, we don't care about masks," and it's like, that's because there's other people in your community who do want to come but can't because they showed up and no one was wearing a mask and so they left because they don't want to die. Or like, you know, they don't want to....

Leah  1:06:07

And it's fascinating, because like this.... Sorry, I don't want to cut you off.

Margaret  1:06:10

No, no, I'm basically done. It's just like, we just need to accept responsibility and fix shit. And that's, and that's the preparedness thing that you've been talking about is like, you look at your list of problems, and then you figure out how to do it, and you become really inventive about how to do it. And our problem is that Covid is around and so our solution can't be, "no more live music," because that is a part of living that we should appreciate. Right? But it also can't be "Pretend it doesn't exist." Sorry. What were you gonna say?

Leah  1:06:37

No, now, because you don't lay down and die on the hill.

Leah  1:06:37

I was gonna say that, like, I mean, what you said about like, the self fulfilling prophecy of like, "Well, we don't mask, so nobody needs an mask." And it's like, well everyone who needs to mask is home. The thing is, I mean, that was so dead on and also it was like, yeah, I mean, that's also not new. Like that's been like a disabled dynamic for a really long time. And what I mean by this--there's a bunch of examples--but I mean, I'm thinking about in chronic illness and like multiple chemical sensitivities/injury community, something I was involved in was creating more materials around fragrance free and chemical free stuff. Some people might know this document I made years ago now called Fragrance Free Femme of Color Genius. That was just a list of here's different products that are fragrance free and affordable, that aren't just like ye oldie whitey vegan crap that sucks and that doesn't work for curly or textured or kinky hair. But like, you know, we would fight a lot because something that people in MCS and environmental illness and the chronically ill community have faced for years was people when they'd be like, "Hey, can you make it fragrance free?" is people be [exasperated gasp]. I mean, it would just be like, you're asking them to, like serve Christ's head on a platter or something. And they'd be like, "Could you just not wear perfume just for the one fucking time." Yeah. And then the response would often be like, "You just, you can be fragrance free in your house. Like, why do I have to make it fragrance free?" And it's because, and it's like, actually, under the Americans with Disability Act, but also in terms of justice, like we deserve to be in the world, not just in our houses. And yeah, and that thing of like, "I don't know anyone else with this problem." And like, it's because we all had to leave because we were throwing up or we don't even come because we're afraid we're gonna get sick or we know we're gonna get sick of all the chemicals. Right? So it's a real paradigm shift. And like, it necessitates a lot of talking to move from this kind of individualist ableism of like, "Well, you can do whatever weird disabled shit that you want in the privacy of your own home. But I don't have to, because I'm American," to like, oh, actually, we need to make it for everybody. And actually, it benefits everybody. And I remember after like eight years of fighting it out in the Bay, Stacy called me crying because she was like, "Oh my god," like it was like 2016-2017 and it was like a Save DACA rally and she was like, "There were these 15 year old undocumented queer brown youth who are like," because it was indigenous and undocumented lead and she's like, "They have chairs for people to sit in at the front of the rally. And they're like, 'We're gonna hold up the sage and the cedar but not light it because we know that some people have asthma and MCS and if the revolution is not accessible at the revolution,'" and she was like, "I'm crying." Because for years ,especially in BIPOC community, it was a struggle because people would be like, "Wait, these are our medicines," and we'd be like, "We know. We use them too."  And I just have friends who are indigenous who are like, "If there's so much sage in a tiny room, I'm going to have an asthma attack and like it means I don't go to events." or like, you know, Copal or different medicine, are there ways we can have the medicine present and do it accessible for everybody? So more access gets more access. If you make more for everybody, everyone will be there. Blah, blah, blah. I will die on this fucking hill, but....

Leah  1:06:49

Yeah, I'm surviving on the hill. I'm surviving on the flat, accessible space. Shout out to disabled punks. Because there's, you know, we've been here for forever and, you know, especially in the past 15 years, like I feel like that is one place of hope where, you know, I'm like a semi-punk but like yeah, like I'm punk. I mean, I still have green hair or whatever. I think I'm a punk.

Margaret  1:10:04

You're a punk. I'm looking at you right now. You are as punk as I am.

Leah  1:10:10

Totally. I mean, I also have, you know my feet in different subcultures too. But I just hear there's a lot of different spaces. I think about like Gilman's still, last I checked, you know, had a bunch of disabled folks on the collective and they're like, "Yeah, we're still. Everyone masks," or like Vera project, which is a very loved, all ages venue in Seattle, where I'm not...I haven't checked recently, but I know that for a long time, they were like, they were one of the first places in Seattle that opened back up to live music and are like an all ages, anarchist queer space and they were like, "No, everyone masks and we have HVAC, or I'm blanking on the name of it, but a friend of mine, who is you know, really.... Biani, who taught me so much about masking as somebody with like severe MCS and other disabilities, they've posted a lot about how they're like, "I live in Albuquerque now. And there's a monthly burlesque/drag night that requires masking." And they're all these performers who are wearing the really good, hard mask. Like it's a really great respirator and also looks sexy as hell. And you can breathe in it. And they're just like, "Yeah, like, we can actually have a slutty drag, burlesque punk night and no one dies." How about that, y'all? Yeah, I mean, this is the thing.... I do want to shout out, if I can toot my own horn for a second, um, you know, I sent to you, there's a document that me and my friend Tina Zavitsanos put together earlier this year, "The Long Winter Covid Survival Guide." And we did it because we were just like.... Look, I mean, you know, the first year or two of the pandemic, I was in Seattle, and we really did have a bunker mentality of like, okay.... Yeah, we were like, eventually the vaccines will come, and at the time we were like, and they will just eliminate Covid. And great. So we just have to survive till then and not get COVID. So I was very much just in my house with the people I live with or by myself for like, you know, a year or two years. Yeah. And then, right around 2022, we were like, actually, no, it's not, it's not panning out that way. And we really are really, really struggling in isolation. So Tina is a friend of mine. We work together and they're on immune suppressants for their disabilities. So they were like, "I didn't really leave my house more than eight times to go into public spaces in two years," cause they were living in Brooklyn, and they were just like, "I don't have an immune system. And if I go to the hospital, like, it's just gonna be all bad. Like I cannot...I really cannot put myself at risk." And then they moved to lower Manhattan. They're living in an apartment in Chinatown now. And so, and they're also a sepsis survivor. And you know, sepsis, if you survive it, your immune system is altered for two years after that, or if you get like, cold, you can die. So they were just like, "I can't let anyone in my apartment but my partner, period." So I was just like, "Well, I want to see you." And they were like, "Well, there's a park across the street from my house." And we just call it Tina Park now amongst her friends. And they were like, we figured it on all this stuff. Like they were like, yeah, like we're living in Manhattan, but like, we have a portable gas generator that heats up. And we got sheepskins from IKEA. And we have hot pockets and like hot packs that we put all of our bodies in our shoes and like we're gonna order pho and eat it.

Margaret  1:13:22

But now I’m imagining Hot Pockets, like the food, and you're just putting microwaved Hot Pockets in your clothes.

Leah  1:13:33

But so basically out of that, I was just like, "Tina, I know so many people who are really...like this is a grim winter because everyone's just like 'fuck, like I have survived in isolation. But I haven't seen anybody in person, haven’t been touched for years. And I don't want to get COVID What do I do?'" So we put it together. And we put it out there as a like, "Yeah, if you are in cold areas, like here are ways that we can gather more safely outside as disabled people, including disabled people...like I have disabilities where I'm like, yo, if I sit in the cold too long, like I get really fucked up. I will be in a flare for a week. And I think that's another example of what we're talking about. It's not about either total denial of Covid, throwing ourselves off the cliff, or just lying down and dying in isolation, but about let's have live music, let's have burlesque, let's hang out in the park with our fucking portable heater, and our fucking sheepskins, and our layers and, you know, be able to be with each other safely.

Margaret  1:14:28

Yeah.

Leah  1:14:29

And not be abandoned.

Margaret  1:14:32

Yeah. Well, that's most of what we wanted to talk about. Do you have anything you want to plug? I mean, there's obviously, there's the stuff you've plugged all along, and we're gonna put...we're going to compile all that and put it at the top of the show notes at the top of the transcript. But, um, is there anything in particular, other things that you want to plug, how people can follow you, or you've written a couple of books?

Leah  1:14:57

Oh, just a few. Yeah. I've written or co-edited ten books, which is wild. My most recent came out, it's going to be a year in a couple weeks. And it's called "The Future Is Disabled: Prophecies, Love Notes, and Mourning Songs." And we sold the first printing in nine months. We sold 10,000 copies, which is really good because my mom died last December and I did no promotion for six months, because I was just like, "I'm going into my cave. I cannot be In public." Yes, seriously. So the second printing is coming out soon. And I'm really excited because I, you know, it was kind of like a writing the plane as I flew it thing where I was trying to write down like, "Here's what how Covid's is looking." And then like, things kept getting out of date so fast. And so I added, there's a new afterword and also includes an article I wrote last fall for Truth Out, which is now called Against the Great Forgetting. And it's about like able bodied leftists can't abandon Covid safety if we're going to win. So that's both in there. And I am really excited because my friend Sandy Ho, who is a really incredible, queer, disabled, Asian organizer is writing a reading guide for it, which we're going to launch for free around the same time. So keep an eye out for that. And it's print book, ebook audiobook. It's in a lot of libraries. You can ask your library to order it. Have reading groups! Think about your own disabled survival and your own disabled future and how you're making it. That's one thing I want to shout out. I also really want to shout out, I Want to Be With you Everywhere, which is disabled arts collective that a bunch of my friends organize. And I want to shout it out because we had our first gathering since Covid started, this summer on the summer solstice in New York. And if you look us up, and I can give you the link, I mean, it was just an amazing day of performance. But I guess the reason I'm shouting out is that the people organized it. We were like, I'm gonna include myself in it because I was an artist and I created a disabled grief portal altar, so I'm like, yeah, I'm like, the Hair Club for Men. I'm a member and also the president because we all are. We were really, and people were really, like, we need to be together. And so it was a combination all outdoor like 95% masked in person. They were calling, it's like IRL in URL. So like, we had that. And then we had full Zoom, and it was 12 hours of gathering. And I know a lot of people are like, "Ah, it feels like either in person or Zoom, but not both." And it was like an example of like, we did both and we did it so that folks who are there in person could interact with folks on Zoom. And we had screens on stage. So like I could turn and like talk to the folks on Zoom and see them and like they can see me and we can interact. And we also just had like really.... I'm always about expanding access beyond the bare minimum that we're taught is the best we can get, so we're like, we have a travel plan. If you need money to get a wheelchair accessible cab, we got. We have, not just ASL interpretation on stage, but interpreters moving through the space because we know that otherwise deaf folks often are like, "Oh, I guess I'll just stay glued to deaf seating and not actually get to like hang out with people and like interact unless my interpreter is with me." I just want to shut out there is an example of a really creative way that we gathered together that was really life giving. And what is other stuff? I think that's all I can think of right now. I'll keep you posted. Places people can follow me are--I am a social media slacker and a hermit but brownstargirl.org is my I-need-to-update-it website. I'm leaving Twitter because fuck that guy and fuck some harassment off and on. And also just like, I mean it's all been bad, but then like the latest like, "Oh, we get the steal off your shit forever." I'm just like, no, I'm not giving you my intellectual property. But I am on Blue Sky at....

Margaret  1:18:46

I bet people just put your name and they'll come up with it, right?

Leah  1:18:51

Yeah, it is @thellpsx.bsky.social. I'm migrating over there. So yeah, like there's not a lot up there yet. But this could motivate me. You know, I'm gonna have to get back to you on my public Instagram because I can't find it right now. You can Google my name and stuff comes up. And also one thing I do want to shout out is like so last year, I kicked off this disabled centering queer and trans BIPOC disabled folk like writing and creative organization Living Altars. And then my mom died. So like this year has been like really much like chrysalis research, whatever, but um, keep an eye out for Living Altars stuff. We're gonna start a kind of low-key kitchen table online reading series every three months for disabled majority  QTBIPOC writers. And when Stacey died in 2020, one of the things that I really, that really hit me was that she was an incredible, incredible organizer and I will shout out the Stacey Taught Us Syllabus that me and Alice Wong did where you can see a lot of her writing and poetry and organizing. She wrote Bernie Sanders' Disability Justice fucking platform. She did all kinds of shit. But I met her as a poet. You know? I met her when she was 20 online as a poet and I really saw the ways in which she struggled to find, like many of us do, accessible space to write as a queer disabled POC who had a million things going on. So I've been working on creating an accessible residency in her honor and one of the things that Living Altars is going to do is I'm hoping to launch that next year. So yeah, just Google Living Altars and my name and it comes up and there'll be all kinds of shenanigans. And We're going to also update the Long Winter Survival Guide soon, because a lot of people wrote in and had amazing things to add, especially a lot of folks who live in Canada and like more northern colder places were like, yeah, "Here's different things you can do with like shelters, furs, heating, different things like that. So I like to think of myself as a structural engineer of disability justice along with.... I'm kind of like disabled Scotty sometimes where I'm like, "Here's the thing. Try it." Yeah. Yeah. So these are some things. Okay.

Margaret  1:21:03

Well, yeah. Thanks so much for coming on. And I hope to have you back at some point.

Leah  1:21:08

Thank you so much for having me. Thank you so much for creating this podcast and being so awesome. And all the things you do.

Margaret  1:21:20

Thank you so much for listening. If you enjoyed this episode, you should fight for a better world. And tell people about the podcast that encouraged you to do so. Being like get put our logo onto a flag and then carry it and be like this is the flag of the revolute. Don't do this. Don't do what I'm saying. But what you could do is tell people about it in more polite ways. Instead of making it a weird flag. Why would you even think that? You can also support us on Patreon because we believe in paying. We pay our transcriptionist and we pay our audio engineer. And one day, we might even pay the hosts, which would be cool. And you can do that by supporting us on Patreon. It's patreon.com/strangersinatangledwilderness and if you support us at $10 or more a month, we will send you a free zine every month, anywhere in the world. But also you can listen to that zine anywhere in the world also for free without supporting us by listening to the podcast Strangers In a Tangled Wilderness, which comes out once a month. I want to thank, and there's some new names on this list, which makes me really excited. I want to thank Hoss the Dog and Michaiah, Chris, Kirk, Jenipher, Staro, Chelsea, Dana David, Nicole, Paige, S.J., Hunter, theo, Boise Mutual Aid, Milicia, paparouna, Alu, Janice & O'dell, Funder, Anonymous, BenBen, Princess Miranda, Trixter, Lord Harken, Carson, Marm, Catgut, Julia, Buck, Perceval. Thanks for supporting us. Y'all are great, and I hope everyone does as well as they can.