Show notes
Episode Summary This week on Live Like the World is Dying, Margaret and Leah talk about disability, preparedness, finding community, and covid. Guest Info 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 Leah on Disability and Preparedness Resources Mentioned: StaceyTaughtUs Syllabus, by Alice Wong and Leah: https://disabilityvisibilityproject.com/2020/05/23/staceytaughtus-syllabus-work-by-stacey-milbern-park/ NoBody Is Disposable Coalition: https://nobodyisdisposable.org/ Power To Live Coalition: https://www.powertolivecoalition.org/ Disability Visibility Project article about Power to Live : https://disabilityvisibilityproject.com/2019/10/26/call-for-stories-powertolive/ Power to Live survival skillshare doc: http://tinyurl.com/dissurvival Long winter crip survival guide for pandemic year 4/forever by Leah Lakshmi Piepzna-Samarasinha and Tina “constant tt” Zavitsanos https://www.tinyurl.com/longwintersurvival Pod Mapping for Mutual Aid by Rebel Sydney Rose Fayola Black: https://docs.google.com/document/d/1-QfMn1DE6ymhKZMpXN1LQvD6Sy_HSnnCK6gTO7ZLFrE/mobilebasic?fbclid=IwAR0ehOJdo-vYmJUrXsKCpQlCODEdQelzL9AE5UDXQ1bMgnHh2oAnqFs2B3k Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine. (By Leah) https://docs.google.com/document/d/1rIdpKgXeBHbmM3KpB5NfjEBue8YN1MbXhQ7zTOLmSyo/edit Sins Invalid Disability Justice is Climate Justice: https://www.sinsinvalid.org/news-1/2022/7/7/disability-justice-is-climate-justice Skin Tooth and Bone: The Basis of Movement is Our People (A disability justice primer): https://www.sinsinvalid.org/disability-justice-primer DJ Curriculum by Sins: https://www.sinsinvalid.org/curriculum Partnership for Inclusive Disaster Strategies: https://disasterstrategies.org/ Live Like the World is Dying: Leah on Disability & Preparedness **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…
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