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:
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:
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 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
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