Disability Justice Organizers Dream Big and Resist a Culture of Disposability 

Part of the Series

Movement Memos

In this episode of “Movement Memos,” host Kelly Hayes talks with Leah Lakshmi Piepzna-Samarasinha, author of The Future is Disabled: Prophecies, Love Notes and Mourning Songs about disability justice, interdependence and rejecting human disposability in the COVID era.

Music by Son Monarcas and David Celeste

TRANSCRIPT

Note: This a rush transcript and has been lightly edited for clarity. Copy may not be in its final form.

Kelly Hayes: Welcome to “Movement Memos,” a Truthout podcast about organizing, solidarity, and the work of making change. I’m your host, writer and organizer Kelly Hayes. Today, we are talking about disability justice, interdependence, and why we must reject social norms that treat disabled people as disposable. While many people are living as though the pandemic is over, COVID-19 continues to kill hundreds of people per day in the U.S., with the immunocompromised facing heightened risks. We are experiencing a global, mass disabling event, as well as a heightened disregard for disabled lives. This is a time when we should be taking action to protect one another, by masking in public spaces, demanding higher ventilation standards, and ensuring universal access to health care. Instead, many people have been herded toward “normalcy,” at any cost, even though the world has fundamentally changed.

Today’s guest, Leah Lakshmi Piepzna-Samarasinha, author of Care Work and The Future is Disabled, is a queer disabled non-binary writer, performer, and community organizer whose work has helped many of us gain a greater understanding of disability justice. But before we dive into our discussion of disability justice, I want to take a moment to distinguish disability justice from disability rights work. Because while these concepts are related, the distinction matters.

Disability rights organizers tend to focus on securing equal rights and opportunities for disabled people. Many important victories, like the passage of the Americans with Disabilities Act, in 1990, and the preservation of the Affordable Care Act, in 2017, have been won by disability rights organizers. Disability justice, or DJ, is an anti-capitalist framework that recognizes the interlocking oppressions disabled people face, on the basis of race, sexuality, gender and class. As Leah writes in Care Work:

Disability justice is to the disability rights movement what the environmental justice movement is to the mainstream environmental movement. Disability justice centers sick and disabled people of color, queer and trans disabled folks of color, and everyone who is marginalized in mainstream disability organizing.

For more on the basics of this framework, I recommend checking out Sins Invalid’s “10 Principles of Disability Justice,” their book Skin, Tooth, and Bone: The Basis of Movement is Our People, and disabilityvisibilityproject.com. Leah explores and expounds upon these ideas in their books, while also grounding disability justice in their real world experiences of activism, performance art and catastrophe. Leah’s writing in Care Work and The Future is Disabled, is so engaging. I especially love that they record their own audiobooks, because when I listen, I feel like I have a friend at my side, breaking down complex topics for me — which has been especially comforting during the pandemic. As two disabled organizers, we extended each other a lot of grace, in the process of putting this episode together, as delays kept popping up on both sides. When we were finally able to talk, it was a joy to hear Leah discuss their books and their fascinating life, and I hope you will all find their insights as helpful as I do.

Leah Lakshmi Piepzna-Samarasinha: So, telling people about my background and how it is that I ended up doing this wild and crazy shit is the $12 million question where I’m like, “You got eight hours?” But I think the short version I can say is that I am a 47-year old mixed race Burgher and Tamil Sri Lankan on my dad’s side, and Irish and Ukrainian Roma on my mom’s side, non-binary, femme person. And I’m second-generation disabled at least, because my mom is a polio survivor. And my dad… like, I mean, it’s one of those Sri Lankan jokes we make, that’s not really a joke where we’re like, “Well, the whole country has complex PTSD because of our 27-years civil war,” right? And just all the implications of the war, colonization, migration for a lot of us refugeehood that come out of that. And I grew up working class, lower-middle class in Worcester, Massachusetts, which I would say is the eastern edge of the Rust Belt, right?

Sometimes I’ll be like, “Oh, I’m from Worcester,” and then they’ll be like, “Western Mass?” and I’m like, “No, it’s very different in the college town area that I’m currently living in.” So how I got into the work was, I would say being a young brown, working-class, queer person, the disabled and neurodivergent child of two disabled and neurodivergent people, and in a family where there was a lot of violence. And I grew up, I connected with political community. I left the U.S. to live in Toronto for 10 years, and really got deeply involved with this political milieu that was simultaneously radical Indigenous movement, radical Black and brown movement, very queer and trans, Black indigenous, and POC movement, and psychiatric survivor, and radical disabled folks movement all in the context of being prison abolitionist in 1996.

And that work for me, that cultural milieu for me, really fueled me being involved in disability justice before that was a word. And I’m really doing a once-over-lightly but… So then, there’s 15, 20 years of being a young survivor of color who can’t go to cops, so I get involved in what we were calling transporters justice work but which was like, “Okay, yeah, my brown, non-binary, ex-con ex is threatening to kill me. What do I do to save my life?” Because I can’t use carceral systems, right?

I’m a young, capital C Crazy survivor and I’m linking up with people who are in the psychiatric survivor movement which is a term used especially in Canada, north of the fake border by people who have either experienced psychiatric institutionalization specifically or who have experienced conditions that are labeled as mental illness, fighting for human rights… For example, forced injectable drugging and being locked up is something that we’re pushing up against and fighting against, things like that.

And being a writer at the same time from a really working class, no trust fund, you do it on your kitchen table, queer feminist of color, tradition and lineage. And then, fast forward a bunch of years, I decided to move back to Oakland, back to the States for the first time in a decade to go to this wild and crazy thing called graduate school which I was like, “What the fuck am I doing?”

But really, I wanted to go to Oakland and come back to the States and be in Oakland queer and trans BIPOC community in that era. And among other things, I was there right when disability justice as a movement was just a couple years old, very much held by people like Patty Berne and Leroy Moore in Sins Invalid, which is the organization that in many ways, I would say is the founding organization of disability justice. And I for the first time was able to connect with other revolutionary Black and brown, queer and trans disabled folks who were coming to disability and talking about disability and organizing around disability from our Black and brown, queer and trans bodies and experiences and lineages and being like, it’s not just some white shit, it’s not just some legal shit, it’s about, “Oh, there’s a lot of lead and toxins in the groundwater because of where I grew up, and that’s why people are chronically ill.”

That’s about class and race and disability, right? Or “Wow, let’s look at how half of the Black and grown folks were murdered by the cops are also disabled or deaf or neurodivergent,” and you cannot end police violence without looking at the ways in which racialized ableism works and kills us.

KH: We talk a lot on this show about mutual aid. In both Care Work and The Future is Disabled, Leah discusses some of the differences she’s observed between disabled mutual aid and mutual aid projects that are not organized by disabled people, and what we can learn from those distinctions.

LLPH: I talk about in The Future is Disabled, my current book, I talk about being in Seattle during the pandemic and all the ways in which I saw disabled people in Seattle, and more generally reaching to each other that looked really different than the local Seattle Mutual Aid that I tried to reach out to where I was like, “Hi, can I jump in?” And they were like, “Oh yeah, we’re going grocery shopping because the poor immunocompromised people, they can’t go to stores. Isn’t that awful?” And I was like, “I am immunocompromised. What do you get from me?”

And they just never got back to me, and I was like, “Oh, I’m supposed to be served. I’m not supposed to be an organizer.” Whereas, in terms of, what is this disabled mutual aid? In the book I talk about like… I might not be able to get to it all now, but I was like, “Yeah, I see it. There’s six different ways this can look.” And one of them was disabled people did and continue to do huge organizing campaigns throughout the pandemic for things like vaccine equity, and for things like fighting against what the NoBodyIsDisposable Coalition, I believe first coined as “ICUgenics.” There were all of these laws that were out there and proposals and policies going out in 2020 that were proposing these triage systems that were like, “If these hospitals are overrun with COVID patients, and we only have so many ventilators or doctors or whatever, we are going to triage who gets that based on our assessment or our understanding of who has a good quality of life.”

Alice Wong of the Disability Visibility Project, she started the #HighRiskCA and was talking a lot about how… you know, she’s like, I didn’t leave my house for a year literally because I am on a ventilator. I have a trach. I’m extremely high-risk if I get COVID, right? And I’m visibly disabled, and it is likely that if I go to the hospital with COVID, I might not get the first crack at things.

So, she organized hugely because California like many states had… If you go back to 2021, there were all of those who gets the vaccines first, right? And in some cases disabled people were the front of the line, but in a lot of cases we were at the end of the line. She was organizing campaigns and kicking ass and doing media work, and meeting with state reps to be like, “Change this. So we’re not waiting until next year to get the vaccine.” And what I would say, is those fights for vaccine equity, for access to care, for COVID safe policies, for mask mandates, — those are all forms of mutual aid. And I don’t think they’re often seen that way outside of the disabled sphere, because people were like, “Oh no, it’s individual acts of bringing people soup.” And I’m like, “No, it’s that too,” but it is also working collectively to fight for policies that aren’t going to allow us to live.

Creating tools on a mass scale. I think about what NobodyIsDisposable Coalition did where they were like, “We created a guide for fat disabled elder folks who are vulnerable to survive COVID.” And by that they meant, if you get COVID and you go in the hospital, and you’re at risk of just being put in a corner to die, here are some techniques that we’ve brainstormed you might want to try that… We’re just like, “Shit, throw everything at it’s if it works.” To convince the medical personnel of your humanity and your right to live so that you get those treatments, you get that ventilator. That’s mutual aid. I would say also, that a lot of mutual aid that’s abled often is like these big Google Docs, these 10,000 person networks, these big public acts, right? And whereas with disabled mutual aid, it’s a lot more low-key, and I witnessed it in the big acts that I’ve talked about of policy of fighting for vaccine equity and medical access, and against triage murder and eugenics.

And also on the flip side, a lot of just small scale, low-key, “Hey, how are you doing? You need anything? I’m at the grocery store? You want me to pick something up?” Like social connection, not forgetting about each other, like reaching out to be like, “I’m just thinking about you. Let’s hang out and play a game on Zoom,” which sounds like nothing or whatever to some people, but there’s two things in there. One, I think a lot of the time where abled people or people who have not unpacked their ableism, try and do mutual aid work. They just really come in guns blazing like, “We’ve got to fix this.” And we talked a little bit before we started recording about this disability justice principle we both use, that is like, “Act before it’s a crisis,” right? And so much of the time because of how ableism infiltrates everything, people who have not unpacked their ableism see crisis, and they go, “Oh my god, I got to fix it, I got to cure it. I got to swoop in and be Captain Save a Crip, and fix everything.”

Whereas disabled people, we know we’re just living our little lives. Like, shit happens all the time. Our diseases are chronic and so are the conditions we’re dealing with, still we do a lot more low-key checking in before before shit gets bad. I think the TL;DR is abled mutual aid often views disabled people as a problem to be solved and fixed, and us as clients or patients to be served or cared for. And disabled mutual aid sees us as agents and as people who have skills and gifts to offer. And both go really hard in terms of, “Let’s smash this law,” and really low-key and every day in terms of like, “Yeah, I’m just going to drop this food off at your front door. And if you’re not feeling verbal or social, you don’t even have to come out, and you definitely don’t have to be grateful.” That’s some of it.

KH: In The Future is Disabled, Leah talks about how challenging it can be to discuss interdependence with activists and organizers. In workshops and panel discussions, they often found that people either idealized interdependence as a conceptual cure-all, or flat out refused to believe that such dynamics were possible. So why does interdependence feel all but inevitable to some people, and wholly impossible to others?

LLPS: Interdependence is wonderful and it is not easy for a lot of people to access, and that’s not just because often people are isolated, though that’s true. It’s also that for a lot of us, we have been taught that it is not safe to ask for shit, because people will look down on you as weak or less than or other. Or I’m just thinking about people who grew up with a fear of CPS [Child Protective Services] or children’s aid coming into your house. And if it’s too dirty, they’re not going to offer you help, they’re going to take you away from your family, right? Just give one example.

So, what I would say that in terms of interdependence, it is not as simple as just, “Oh, just call me if you need anything.” There’s a lot of pre-work that needs to be done where you got to figure out what is a small step that I can take to even be willing to be like, “Yes, I will accept help.” And what do you need for that to be safe, right? I think about how for years there were things that I could start to ask for in terms of mutual aid and the treatment and some help. But some of the things that I needed the most, which I’ll just be really real. Like, when I have a flare of one of my chronic illnesses, it can be really hard for me to do housework and keep my house clean. And I am a former house cleaner who is the daughter of a working-class mom who is like, “You would kill yourself before you have anyone clean your house for you. You do that!”

And there’s also a lot of class-based shame around, “Don’t let anyone see your house be dirty.” So for years when people be like, “Oh, can I help you?” I would just sit there and be like, “I really need someone to come over and take the garbage out, but I’ve got all kinds of class- and race-based stuff going on.” That’s like, “I’m not going to let anyone do that.” And then, I had this moment where an old friend of mine who’s also working class Asian queer femme who had a similar disability, I was like, “I’m fine, I don’t need anything. It’ll be okay. I’ll do it in a couple of days.” She was like, “Bitch, I’m coming over and doing your laundry.” And because we had similar class and race shit and disability, I opened my mouth to tell her not to, and then I closed it.

And I was like, “Okay, you, I will show my dirty house.” And she didn’t shame me for it or our friendship didn’t get fucked up from that afterwards, right? She wasn’t looking down on me. I was able to risk because there was that trust that was there, right? So, I think, yeah, I mean, the nuts and bolts is like, you got to think about what you need and what histories you’re bringing into the equation. There’s so many people who can socialize to just always give and never receive. And it’s really easy for us to do that. I mean, I’m thinking specifically of Black and brown folks, especially women and femme people who are like, “Oh yeah, we’re the cleanup crew. We’re the ones who always come over and do the dishes. That’s our fucking lot in life, and up our value.” And this may seem really precious, but I’m like, no, actually you got to think about what you feel comfortable doing, what you feel comfortable receiving, where you want to grow it, what you need to grow it, what lineages you’re healing.

I mean, so many of us come from people who never got to be cared for. I would also say, I think that people who romanticize interdependence, I just want to say as a long-term disabled person who loves other disabled people and neurodivergent people caring for each other, people are in bad moods sometimes. A lot of the time, especially when we really need the most help. Interdependence means doing shit that is not glamorous, that is funky, that sometimes someone needs care and they are really pissing you off.

And yet, even people who are really annoying deserve not to sit in their own shit, right? So then it becomes really thinking about, okay, what multiple systems can we design so that we get what we need? And that you don’t have to be pretty or polite or perfect or popular to get those needs met. And also, that maybe don’t verbally abuse or otherwise abuse the people who are helping you out, which happens sometimes, right? And I always lift up Hand in Hand, which is I think they’re now a completely separate project, but they came out of the National Domestic Workers Alliance. And it was this really groundbreaking project where they’re like, “Let’s bring together disabled folks and home care workers, personal care workers,” right? And there’s overlap. There’s a lot of people who do personal care and house cleaning and home support work who are disabled.

I was a disabled house cleaner and historically, politically, we are groups that have often been at odds. It’s a little known fact outside of those two communities. But in a lot of organizing for domestic workers getting minimum wage, time off, vacation pay, health insurance, sick time, white disability rights organizations sometimes have organized against that, because they’re just like, “We can’t afford to pay for that and we’re going to lose our care workers.” And that’s some racist bullshit. And it is also coming out of a place where crips are like, “We can barely get PCAs [personal care assistants] and now you want more money, the government’s just not going to pay for that.” And I’m like, I get that, but I still think that making the demands of the state and refusing and fighting like home when the state claws back that money and that funding is important. But I also think as radicals who are trying to dream something other than the current shit show of empire that we live in, we need to start thinking about, okay, in the good futures that we’re imagining and trying like how to make, I want there to be structures where everybody gets care, and it’s not just through your friend group, so you could get that. I want there to be a people’s disabled-led, racially and economically and ableistly just system where, “No matter what, you are never left alone to starve to death and have no one to change your diapers, Where you get all the care you need.”

And I will die on this hill, if we disinvest from the military-industrial complex and take all that money that currently is held by Amazon and the police state and militarism and empire, and put it into care, we can have that in a heartbeat. No problem. So, what do I want people to know is that if you bump into shit, [while] we are trying to do unpaid, interdependent mutual aid and we’re burning out… It’s not you. It is the fact that we do deserve more than sometimes what our four friends can pull off or a whole community.

And I think the response that I would say then is not… “Well, yeah, clearly interdependence is a lie and sucks.” But to be like, how can we resource this more? The TL;DR is like, don’t romanticize it, it will suck sometimes, it will be beautiful sometimes, it is… It can be highly pleasurable and it’s not always, and it still needs to get done. And we can do a lot, and we also do need something that is a large meta system that is not the state that can provide care on a mass basis that we don’t currently have.

KH: In the spring of 2020, there were a lot of Google docs circulating among activists, and others, about how to survive the pandemic. From guides on how to make masks to the do’s and don’t’s of safer protesting, many of us were creating resources to help people navigate a disaster that few of us had anticipated. During that time, Leah created a Google doc called “The Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine” that many of us latched onto. Prior to the pandemic, Leah already had existing plans of action for various disaster scenarios, because, as a disabled person, they expected to be left behind by the system during a crisis. In a moment when many people without disabilities were also feeling left behind by the system, Leah’s resource went viral.

LLPS: First of all, I think disabled people are prepping all the time. All of us, whether we call it that or not. You’re a wheelchair user and you’re all… The wheelchair users I know, the power chair users I know, people with limited mobility are always doing things like, “Okay, what happens with my cure attendant just doesn’t show up for her shift? Okay. Well, I’ve got this yogurt container by the side of the bed, I can roll over and piss into it. Or this is how I can cap myself,” right? There’s so many ways that disabled people are always stockpiling meds or making plans for, “Okay, if I have a panic attack or I throw my whole body out in the middle of this airline flight or this medical procedure, here’s like…” We’re always thinking three steps ahead to what will we do. I know so many disabled people who as much as we can are always like, we got our stash of rice and beans, we got our stash of meds, we kind of trust nobody to a degree, because we actually know that we’ll be abandoned.

So, we do prepping by figuring out, like, what are the medical and disabled supplies, and mental health hacks for not completely losing it in isolation that we need to prep for, if we’re snowed in or we can’t leave the house because of the wildfire or some kind of shit, right? I mean there’s that truism, which is that people who have fewer resources are more inventive and more resourceful, and more creative with what we have because we have to be, because we can’t just roll out and assume that we can do the fucking 300-yard dash and have all the money in the world to buy what we need. So by that token, disabled people are always being creative and being like, “How are we going to survive this? How are we going to survive being abandoned,” because we’ve already been abandoned over and over again.

I mean, I think that document, I made it primarily for other disabled people who were scared shitless, and as part of a lot of collective resource sharing and document-creating and tool-creating that was happening in DJ community at the time. But then all of these abled people were like, “Oh, shit. The crippleds know. Let’s read about this. Oh my god, you know how to purify water?” And I was like, “Indeed, I do. Get a life straw. They’re $30. It will be good.” And I think, in terms of what’s happening now where it’s two, three years later, and all these abled people are just like, see no evil, hear no evil, smell no evil, what pandemic? Let me just live in denial. Let me accept what the government’s telling me in a way that is wild.

And I believe in coalition and community-based work, but there are ways where I’m just like, “Okay, disabled people increasingly feel so siloed, like we are just yelling and signing into a void on Twitter and wherever being like, ‘Pandemic’s not start over, look at these 3,000 people who died this week. Look at the rates, look at the wastewater.’” And everyone else is like, “la la la la la la la la la la,” not listening to us. And what I see coming out of that is that three years later, I still see disabled people creating and sharing so many tools about how do we survive this part of the pandemic. I was talking with my friend Tina the other day and they were like, “Yeah, I may not be able to go into public space for the rest of my life, or at least until 2027 or something like that.” We’re still prepping but we’re now prepping for a forever pandemic that the state is saying doesn’t exist.

I know a lot of disabled people, myself included, have really been struggling with a lot of despair and a lot of really, it is a bleak fucking time. Especially, I think, in the parts of the northern hemisphere that are in winter right now. It just feels like, “Fuck, this is it. It’s never going to be over. We’re in this forever.” And it can feel really like, “What do we do? How do we even face down the enormity of all the violence and eugenics that we’re in? The ableist, eugenics fascist moment that we’re in?” And I think that the tools that I see people creating for like, “Here’s how I get together with four of my friends.” There’s this COVID Safe for Cuties Instagram that just started, specifically for high-risk folks who want to date. And it’s all personal ads that are like, “You wear an N95 everywhere, too, great? Do a PCR and come over.” And I just want to lift that up because I think there’s a lot of hope in that, and it’s a real specific disabled form of organizing… Disability justice form of organizing of starting where you are. When you’re assumed to not be able to do anything, that you’re not an organizer, that your actions don’t matter, and doing really concrete stuff to help yourself and your community survive.

And I will do a quick plug for this document that me and my friend Tina Zavitsanos have been working on, that we’re going to probably drop this weekend that’s called, “The Long COVID Winter Survival Guide.” And it comes out of us being like, we love virtual space and we love Zoom, and also three years in, we are really feeling the effects of not being able to be physically together with other disabled people first of all, and being pushed out of public space in an act of violence on the other. I just want to let people know that may have dropped by the time this comes out. And one thing that I’ve been doing is like, being with other disabled people is keeping me alive.

KH: Disability justice was a hot topic, at the start of the pandemic, largely because people without disabilities suddenly identified with the concerns of disabled people, and also valued their wisdom about how to stay safe and survive a crisis when your government leaves you to die. But as Leah mentioned, in the deadly rush to revive normalcy in the U.S., and elsewhere, we are experiencing an ever intensifying disregard for disabled lives. So our context has shifted, and we are now talking about disability justice at a time when reciprocal care and a refusal to abandon other human beings are becoming increasingly revolutionary ideas.

LLPS: So, I wrote this book The Future is Disabled during mostly 2020, 2021 and then it comes out in 2022. And I felt bittersweet about it because I was like, “Fuck, I’m documenting these moments in the middle of Pandemic Calamity where people organize on massive scales to care for each other and keep each other alive,” and it’s coming out at this moment, like I have this book that’s called The Future is Disabled, and I had not a few disabled people say, “Yo, it does not feel like the future is disabled. It feels like in the future and in the present, we’re all being slaughtered.” And I was like, “God, I feel like a dick for writing this book and putting it out there in this moment. It feels complicated.” And as you said, we’re staring down this moment right now where a lot of the hope that a lot of us felt, the revolutionary hopes of 2020 and 2021, feel really dashed, and we just have Biden being like, “What COVID?” The public health emergency is over, disabled people being expected to withdraw from society or just die. The violence of borders, the fucking torture of prisons.

And you had said this thing about the idea of reciprocal care is getting more revolutionary. And what I think about that is I agree, and I think that for me, it’s about reciprocal care, but it’s also about solidarity and having expectations of each other that we can’t just abandon each other and use what privileges we have to survive the calamities that we’re in, right? And what do I mean by that? I mean that something in the disability justice-verse that I feel like I hear people talk about a lot recently is just this feeling of like, man, a lot of abled BIPOC revolutionaries, you know, it’s kind of this feeling of like, “Oh DJ, that’s so 2020.” There’s a lot of people who were hitting us up for disability justice knowledge and trainings and workshops and whatnot in 2020 who in 2023 are having unmasked times in the club aplenty, and just in-person gatherings with no COVID safety. And are just throwing out everything we did for the last three years, because they’re just like, “Oh, it’s so depressing.” And siloing disability justice thinkers, organizers, people, and not including our voices or listening to us or learning from us, or seeing us is important.

And it’s really been pissing me off. And I also understand that internalized ableism is a hell of a drug, and in the face of just this overwhelming death parade, you know a lot of people are kind of like cattle in a chute with the fucking electric prods. They like, “All right, I’ll just keep moving forward.” It’s really hard to face the enormity of what we’re in, and some people can only face it a little bit. That might sound harsh. I don’t know. I mean, I guess what I’m trying to say is, I think that it’s okay for us to have expectations and demands of each other in terms of solidarity. And that I am really heartened by abled organizers, or maybe they’re not, but they’re people who I don’t see as identifying as capital D disabled, who… like, I’m thinking of everything from, okay, The Click Clack Club, it’s a strip club in Chicago, it’s a queer and trans BIPOC strip club. And I follow them on Instagram, and they were like, yeah, we listened to the demands of the disabled organizers of the letter to the Chicago party scene that came out in 2022. That was a letter that came from disabled people in Chicago who were like, yo, we are disabled queer and trans people, and we know that you need to make a living, but we are seeing this thing happen in 2022, where all of a sudden it’s “masks optional, but encouraged.” But then in public queer and trans space, whether it’s party space, or I would say also cultural space, political space, marches, there’s no asks a lot of the time of, “Please wear a fucking mask, and we’ll give you one.” It’s like, “Oh, we can’t enforce that, so whatever.” And that’s resulting in disabled people just being locked in our houses forever or risking death.

And the writers of the letter to the Chicago party scene were like, “This is what we’re asking. We’re asking you to be in solidarity.” And they have this line, they’re like, “We don’t want to go back to what was, we want to create something better.” And The Click Clack Club was like, we still require everyone to wear masks, unless you’re actively eating or drinking. And we have good virtual options because we know that even with masking, some people are not in Chicago or even if they’re in Chicago, they’re like, “I do not go into public space because it’s not safe for me, risk wise.” So they’re like, you can see high-quality queer Black and brown sexual entertainment in the safe comfort of your home. And if you want to go out, we want everyone to mask for the benefit of the workers, the staff, the people we’re attending, everybody.

And that shit gives me hope and it’s possible to do. We owe each other solidarity, we owe each other not going into amnesia. And if we are going to survive the fascism that is continuing to increase, we need disabled ingenuity, all of us, both to survive pandemics, and to honestly outrun the fascists, right?

My friend and comrade Elliott Fukui, who works with Fireweed Collective and has his own thing, madqueer.org, it has a lot of really good mad Asian, disaster and fascist survival resources, he’s always saying to me, “In Nazi Germany, one of the first acts of fascism that happened was that parents of disabled children were told, oh, you should surrender your child for euthanasia.” And a lot of people went along with it, and a lot of leftists didn’t critique it, and it’s not that disabled people were the only people being singled out. I’m not saying that, but I am saying there’s a way in which it was posited as like, oh, this is about health, health is neutral, that then did open the doors for the genocide of oppression of Black Jewish, Roma, queers, socialist, everybody, dissidents. And we’re in a fascist hot war, so, if the left and communities at large abandon disabled people, we’re not going to win against it. We’re not. I mean, we’re going to keep fighting to survive, but we need to all be throwing down and not just being like, “Oh, that’s too exhausting to think about. So I’m just going to not.”

KH: In The Future is Disabled, Leah pays tribute to their friend Stacey Park Milbern, a disability justice organizer who passed away in May of 2020. As someone who never got to know Stacey, I was grateful for the opportunity to learn more about her life and work. I also think it’s very important that we do the kind of preservational work that Leah and their co-strugglers have done, to make sure that the lessons and legacy Stacey left behind are recognized and honored.

LLPS: So, Stacey Park Milbern of Beloved Memory was born and died on May 19th, which is the same birthday as Malcolm X, Yuri Kochiyama, and Ho Chi Minh. It is a revolutionary Taurus birthday, and she was a working-class southern, mixed race, Korean and white queer. My friend Max calls her a vanguard organizer. She lived a revolutionary life. She was a cripple young Republican, and then the internet happened and she linked up with other young radical disabled people and started organizing as a teenager. And she organized her entire life. And the things that I want people to know about her as an organizer, was that she really for real rolled her roll, in terms of the disabled people who had been the most written off as, oh, you’re not the Harvard-educated cripple that we’re going to listen to, but you’re someone who’s been institutionalized, maybe you’re developmentally or intellectually disabled, you’re this and that, where people are really not listening to you. She always turned to the most marginalized and oppressed disabled people first and was like, “You have crucial skills and shit that we [need]… You’re a fucking a leader, and I’m going to support you in facilitating that leadership and believing in you.” She was a maestra of developing deep webs of friendship and kinship and connection while keeping it really fucking real as part of her organizing practice. She helped to organize some of the most badass disabled organizing, like that action Power to Live when PG&E cut off the power with no notice in Oakland during the wildfires, and everybody who needed to keep their insulin cool or charge their wheelchair was shit out of luck. And she organized with other people in a heartbeat to create a mutual aid network where there was just networks of houses where peoplestill had power, where people could plug in and people were info sharing about, “Here’s how you make a fucking refrigerator with dry ice in the clay pot in your backyard.”

That came out of her practical and technical brilliance, and also, she really believed in relationship-building for real as what was going to make the movement work, because we had to be able to build trust with each other. And she knew that as disabled people, we often have to work to overcome our internalized ableism in the ways we’ve been separated from each other to be able to really learn how to love ourselves and each other, to be able to organize effectively. She brought so much disabled pleasure activism to her work. Our relationship was grounded in food and shit talk. There was so much good food, there was so much pleasure. There was so much disabled sexuality and flirting in her life and in her work. And she wasn’t just this good little Asian girl. She got infantilized a lot, but she was a real fucking brave delicious badass. She was deeply spiritual.

She was going to a Korean radical church, a jazz Black liberation fellowship church, and also doing traditional Korean Indigenous spirituality. And she leaned on that spirituality to do disability liberation, theologically led work. She believed that God made disabled people as we were, and that we’re fucking perfect. And that faith, that belief in a creator that wants us to work towards liberation fueled so much of her work, and carried her through so much medical abuse and bullshit that she faced. Yeah, she is great. I love her. I miss her every fucking day.

One of the acts of resistance that I think is disabled people we do a lot is to work against erasure, because this world wants us dead when we’re alive. And then after we die, they want to erase that we ever existed. Because it’s really dangerous to the state if people know there are disabled communities, histories, schools of organizing, cultures, family groups, like all of that.

So one of the things… I mean, I hate that we had to do it, but first of all, right after she passed, me and Dolores Tejada and Moya Bailey and a couple other people, we all were like Stacey wrote huge movement essays on Facebook. And we were like, “Fuck. Facebook might lock her account.” So we spent hours archiving, copying and pasting and archiving and saving all of her writing. And then Alice Wong of Disability Visibility Project approached me… I think it was Alice’s idea, she was like, “We should collect, we should make a syllabus that’s all of the video and essays and poetry and anthology pieces that Stacey created.”

So we created the #StaceyTaughtUs Syllabus, which comes from… Stacey visited the Radical… I’m sorry, it’s very hard to talk about… Radical Monarchs is a radical alternative girl scouts that people may have heard of. And Stacey came to talk to the young people of Radical Monarchs a lot. These young, Black and brown folks, about disability justice. And those kids, those radical Black and brown kids in Oakland created the hashtag #StaceyTaughtUs, and we used it with their permission.

So you can check out the StaceyTaughtUs hashtag, it’s up on Disability Visibility Project, it’s easy to find. And I just want people to keep learning from her work and not making her into a plastic saint, but engaging her as a real person, and I hate the term thought leader, but she was such a fucking badass thought leader and innovator and grassroots intellectual and worker in creating DJ. And that’s why we wrote with each other for our whole 11 year friendship and comradeship. And that’s why I was like, I’m going to have some very long quotes from Stacey in this book, so that people can keep learning from her work. And the last thing I want to say is that Stacey really organized hard tactically and strategically.

There’s a movement story I think about where she was at this demo in Oakland, and she called me and was like, “Oh my God, girl, it’s happening.” And I’m like, “What?” And it was early in Trump when it was one of the first times that Trump tried to kill DACA. And there was this huge rally in March led by undocumented teenagers, young people, and she was like, “Girl, it paid off. These 15 year olds are on the mic. And they’re like, ‘Okay, we’re holding up the stage but we’re not going to light it because we know some people have asthma. But we want the medicine to be here and we’re learning from Disability Justice and we have all these chairs up front and we’re going to let the elders and everyone who walks slower to lead the march, because if the revolution is not accessible, it’s not the revolution.’” And she is like, “Girl, all those years of conversation paid off. The youth are okay. They get it.”

And she was always looking to the future.

And I will say too that in terms of something I forgot to say before about Disability Justice survivalism is that… I mean, we have this story in the book where in 2011 when Fukushima happened, she had just moved to Oakland and we were like, “Fuck, this radiation. We’re all disabled, what do we do?” And she was like, “Well, my plan was always if there was a disaster, but I was just going to lay down and die because I assume I’m going to be abandoned. I assumed that people were just going to leave me in my power chair in the dust and not put me on the bus because it won’t have a lift. And my shit runs out of battery power in 48 hours.” But then we started having these crip disaster planning meetings in this spare room of the Arizmendi Bakery of San Pablo.

Shout out to our friend Remedios who worked there, who was like, “Yeah, it’s wheelchair accessible, you can use it.” And we were just like, “What if we started organizing mutual aid around not dying, if there’s fascism or a radiation attack, whatever, an earthquake.” And we just had shit like, “Okay. If communication goes down, we’re all going to meet at this one traffic circle and we’re going to bury paper and markers in a plastic bag and we’re going to leave notes for each other and our cell phones are down, and we’re going to figure out, okay, we’ve got friends with two accessible vans. We’ll figure out a way of getting out of here, not on the highways.”

And honestly, 10 years later with COVID and with power shut offs and wildfires, she was like, “Yeah, we started doing that 10 years ago and we’re really living the apocalypse now. And we started doing it then.” So I would say to people listening like don’t think, “Oh, she’s special. I couldn’t do that.” You can do that out of the conditions of your own lives. You can start now and you don’t know where it’s going to flower. Okay, that’s it. That’s my Stacey speech.

KH: The pandemic has been an era of loss, and also an era of change for many people. As someone who was already disabled when the pandemic began, I am now grappling with additional medical issues brought on by long COVID. Millions of people are struggling with the impacts of long COVID — including symptoms that have left many people unable to work. Given the scale of the crisis, it’s impossible to talk about the future of disability justice without also discussing the impacts of long COVID.

LLPS: I think that there’s a tremendous amount of badass organizing on the part of people, like Long COVID Justice and MEAction and huge, huge, huge grassroots organizing where everyone’s just raising hell, being like, the government’s abandoned us. They do not want to pay for this massive amount of… They don’t want to pay everyone’s SSDI [Social Security Disability Insurance], they don’t want to pay everyone’s medical bills, they don’t want to do shit. They don’t even want us to have eight free tests for come May. They just want the rich to continue to grow wealthy. And the question then becomes, in terms of mass organizing on the part of long COVID havers and people who are in solidarity with them, what are the actions that we can pull off, right? And I’m really heartened by seeing a lot of folks in [the] Long COVID movement draw parallels to like, let’s look at AIDS activism, let’s look at the long history of people with chronic fatigue, immune deficiency syndrome and ME [myalgic encephalomyelitis], fighting the government for years, and the medical-industrial complex for years. And the knowledge that we’ve also created around post-viral syndrome, pacing and being able to be in remission, not cure.

But I think the questions I have are… I mean, right now it does feel like we are banging on a brick wall that does not cure, in terms of screaming at the government. Like, the CDC is bullshit, Trump’s bad, Biden’s not great. I mean, when you have the head of the CDC, I know it’s been over a year saying, oh, well, only the chronically ill and disabled are really suffering from Omicron, so that’s great. What did she say, that’s very promising news? We know that we are fighting the forces of evil even if it’s a Democratic government. So then, I think it becomes like, what are the strategic alliances that we can all do to yell and beat on that brick wall?

And what also are the alternative institutions that we can build separately, and can we grab money and resources that are out there from different parts of the movement to be like, let’s build the people’s Long COVID Healing Center. Let’s build The People’s SSDI, let’s build The People’s Guaranteed Income Payments in local rural areas, municipalities, cities, et cetera.

And there’s other questions about some parts, not all at all, not most of it, but there’s some parts of long COVID activism where it’s very newly disabled people who don’t know that there’s long histories of disabled activists, who are like, “Wait, my doctor’s not being good to me.” And it’s like, yeah, no, mostly that is true for most disabled people and most people in general. So I think there needs to be a challenge of the times and the ways in which privilege dynamics pop up in Long COVID organizing. And I think a lot of Long COVID organizers who are Black, brown, politically radical, et cetera, are doing that and are in leadership. And it needs to keep happening.

And I think that we just need to start to continue to keep gaming out strategies like, what do our people need? And I think that in terms of the left writ large, it’s part of that radical reciprocity where I think some parts of the left writ large are like, yep, same struggle, same fight. We have to throw down. We have to alter our organizing, the ways we organize, the pace we organize, our expectations, our demands to centralize the reality of Long COVID is everywhere. We can’t be surprised by it, and we have to join in and make demands. And I think, a lot of big movement spaces are doing it, and some of them aren’t. And that needs to shift.

KH: As we wrapped up our conversation, Leah had some words of insight and advice for people who are feeling stuck or discouraged, in this moment.

LLPS: I want to ask the audience to move away from this being like, think about… If you’re frozen, if you just feel stuck, think about what’s a way that you can start slowly wiggling — and not leap towards being on the barricades with a gun, but when we’re frozen, and the stakes are so high, it can feel like, fuck, I can’t get from being totally frozen to this, like, imagined huge revolutionary struggle that it feels like the times are calling for. But, what’s one step you can do? What’s one thing that you can do? What is an action you can take? And when you start moving, you do the thing, then it can embolden you to be like, “Okay, I can do something else.” And what do you need to be able to support you in doing that work? That’s one thing.

And what’s on my heart is connected, which is that… I’m not the only person to say, we’re in a huge grief crisis right now, and things are not good in Denmark. They’re not good here. And I hear so many people talk about just witnessing, just seeing a lot of people, you know, losing it, starting to scream on the subway, going into mental health crisis, lashing out horizontally at each other, completely withdrawing, not trusting anybody, all of it. A lot of people have really broken hearts. Really, really broken hearts. And I think we… I keep hearing from people over and over again being like, “Everyone’s frozen. Everybody’s stuck.” And yet, the fascists are advancing every single bad thing in the whole world. And I think something that’s really on my heart is that some of our work, and this plays into every question you’ve asked, has to be how do we normalize grief and grief stewardship in the work we’re doing?

And a lot of people are talking about this. I’m not unique. Like Lenée A. Voss, who some people know is Dope Girl Fresh on a lot of platforms, she posted this beautiful reel the other day where she was like… I’m paraphrasing, but she was like, we need to get really real that we’re in the middle of a massive grief crisis, and we gotta get real about it quickly, because it’s already reshaped human society and it’s about to really do so. And I was like, “Thank you. I needed to hear that.” I mean, I’m going to make it specific. So my mom died seven weeks ago today, and in the past month, four people who I share community with died, that I know of. And all of their deaths have something to do with the current moment, whether it’s Mira Bellwether who wrote Fucking Trans Women, she passed on Christmas, she had cancer, but her partner has posted publicly on Twitter being like, here’s her brain scan. Mira did have cancer, she also had COVID, and here’s the changes that happened to her vascular system and her veins and her arteries. She had a stroke and she could not get good long COVID treatment, and that probably hastened her death.

There’s a lot of people who are dying literally of broken hearts. And I was just mentioning this to someone and they were like, “How the fuck are you still talking and seeming sort of okay?” And I was like, “I reach out to friends and talk about it before it gets into crisis. I reach out to my friends and we cry together and we make room for it.” And I’m thinking of something my friend Audrey Huntley, who’s a mixed Indigenous and white organizer with No More Silence in Toronto. She’s actually reviewing The Future is Disabled for Upping the Anti, which is this lefty periodical in Canada that some people might know.

And we were just talking and she was like, obviously there’s a ton of Indigenous disabled people, but I’m seeing like, when you talk about in disabled communities, it’s the ways in which grief is not a surprise. Death is not a surprise. And the way you hold it is by sitting there and not censoring each other about it and just being like, “I’m going to be in this with you. I’m going to let you cry. I’m going to let you be weird. I’m going to not make you pretty it up.” She’s like, yeah, with No More Silence, we are a missing, murdered Indigenous women, girls, two-spirit and trans folks organization. We’ve been holding protests outside of Toronto Police Circus headquarters for 20 plus years, and it is really similar. She’s like, we are always dealing with death and loss and we hold it together.

That’s why feasting is important. That’s why being together is important. She’s like, “I’m excited. I’m going to go out to Strawberry Ceremony,” which is that gathering in a couple weeks. And she’s like, yeah, we did it virtually the last two years and we still are, but we just really needed people to be together, with N95s on outside, because, she’s like, what holds it is community and is connecting safely and accessibly, and we hold it together more than we can hold it on our own, the enormity of this. And we don’t have to tie it up neatly. We hold the grief together and our hearts are able to continue that way. And I just feel like whatever movement or community work we do going forward, we have to make a space for grief, literally at the table and call on our dead and normalize showing up crying in a meeting and not make people feel like they’re messy or weak when they have that.

And also knowing that everyone’s grief process is different and some people are going to be shut down or not wanting to talk about it, and that’s okay. But just knowing it’s there and it manifests in so many different ways and we cannot organize the way we maybe have done in the past where the grief and death was not so omnipresent.

So we ignore that at our peril and also not just our own peril, but it’s like that grief is also fueling fascism in that the fascists are creating nice, happy, simple answers of like, what COVID? You can just ignore it. Let’s blame everything on BIPOC, queer, trans, disabled, poor folks, you know, sluts. Let’s scapegoat people, and then you can be safe, and you don’t have to pay attention to your grief. And part of the work we have to do is create space that speaks to that because we are creating room for grief and emotion, and we are creating the new world out of that. Out of this loss.

KH: I really appreciate the concept of grief as stewardship. I believe in the value and importance of that stewardship, and I believe that abandoning that work harms our humanity. I think a lot of people are moving through the world wounded, with their guard all the way up, and they are leaning into normalcy, because those moments in the pandemic when they could not deny what was happening, and they had to acknowledge that their world was changing, were unbearable. So the illusion of normalcy is easier, for some people, even if it has a massive body count, and even if they are destroying their health through repeated infections by participating in this cycle. We have a great deal to learn from disability justice organizers, who are often masters of adaptation, about how we can build a future predicated on inclusion and reciprocal care, rather than a system that is maintained by exclusion and disposability. I believe we can build that future, but it won’t happen if we follow the edicts of the ruling class, throwing people away as needed to maintain the norms of capitalism. To upend those norms, we are going to need a level of solidarity that most of us have not experienced in our lifetimes. A solidarity that is grounded in care, reciprocity and a refusal to abandon one another. If that sounds impossible right now, I recommend following Leah’s advice, and asking yourself, what’s one step you can take today, or this week, to move toward that world?

I want to thank Leah Lakshmi Piepzna-Samarasinha for taking the time to talk with me about their book, The Future is Disabled, which I hope you all will check out. Leah is a visionary thinker and I think we could all use their voice in our lives.

I also want to thank our listeners for joining us today. And remember, our best defense against cynicism is to do good, and to remember that the good we do matters. Until next time, I’ll see you in the streets.

Show Notes

• You can learn more from Leah by checking out her books, which include The Future is Disabled: Prophecies, Love Notes and Mourning Songs and Care Work: Dreaming Disability Justice. You can also check out their website.
• You can find the new resource Leah referred to as “The Long COVID Winter Survival Guide” here. The resource was published with the title, “a long winter crip survival guide for pandemic year 4/forever.”
• You can find the Half Assed Disabled Prepper Tips for Preparing for a Coronavirus Quarantine here.

Resources:

• Skin, Tooth, and Bone: The Basis of Movement is Our People by Sins Invalid
• 10 Principles of Disability Justice (Sins Invalid)
• Leaving Evidence is a blog by Mia Mingus, who is a writer, educator and trainer for transformative justice and disability justice.
• We Will Build a New Compass: Magic Moments of Seeding More Just Worlds by Chiara Acu
• Fireweed Collective Webinars