What is the difference between disability justice and disability rights? How can we make our social justice movement spaces accessible to and led by people with disabilities of all kinds? What kind of world could we create if we valued and centered the experiences of our most marginalized community members?
In episode 62 of the Imagine Otherwise podcast, host Cathy Hannabach interviews writer and cultural worker Leah Lakshmi Piepzna-Samarasinha about the past successes and current challenges of the disability justice movement, how to create truly accessible performance and art spaces, and why helping survivors remake the world is how Leah imagines otherwise.
Guest: Leah Lakshmi Piepzna-Samarasinha
Leah Lakshmi Piepzna-Samarasinha is a queer, disabled, nonbinary femme writer and cultural worker of Burger/ Tamil Sri Lankan and Irish/ Roma descent. She is the author of Dirty River: A Queer Femme of Color Dreaming Her Way Home (Publishing Triangle and Lambda Award 2016 finalist, American Library Association Stonewall Award 2016), Bodymap (Audre Lorde Poetry Award Finalist, Publishing Triangle), Love Cake (Lambda Award winner 2012) and Consensual Genocide, as well as a co-editor, along with Ching-In Chen and Jai Dulani, of the book The Revolution Starts At Home: Confronting Intimate Violence in Activist Communities (AK Press 2016).
Leah’s work has been widely published and anthologized in Glitterbrain, Room, The Deaf Poets Society, Glitter and Grit, Octavia’s Brood, Dear Sister, Undoing Border Imperialism, Stay Solid, Persistence: Still Butch and Femme, Yes Means Yes, Visible: A Femmethology, Homelands, Colonize This, We Don’t Need Another Wave, Bitchfest, Without a Net, Dangerous Families, Brazen Femme, and A Girl’s Guide to Taking Over The World. A VONA fellow, she holds a MFA from Mills College.
Currently a lead artist with the disability justice performance collective Sins Invalid, Leah teaches, performs, and lectures across North America. Leah co-founded and co-directed Mangos With Chili, North America’s longest running queer and trans people of color performance art tour, and also co-founded Toronto’s Asian Arts Freedom School.
Her new book of essays, Care Work: Dreaming Disability Justice, is forthcoming in fall 2018 from Arsenal Pulp Press. Raised in Worcester, MA, she divides her time between T’karonto and South Seattle, rooted in rust belt resilience, diasporic aerial roots, and dirty water.
We chatted about
- Defining disability justice and its history (02:10)
- Leah’s personal history into disability and disability activism (04:00)
- Leah’s first Sins Invalid show (07:08)
- Working with Sins Invalid and disabled performance art (09:48)
- How Leah learned to be unashamed of her disability and her needs (14:28)
- The challenges still facing the disability justice movement (24:15)
- Imagining otherwise (25:43)
Defining disability justice
Disability justice was created by intersectional disabled queer folks who were really sick of the single-issue, white narrative and politics of the disability rights movement. Patty Berne says that “disability justice centers the lives and leadership of people of color, of queer and gender nonconforming people with disability. It is a movement-building framework, not an academic theory.” When people invisibilize the leadership of people of color, of queer and gender nonconforming people with disabilities, it’s not disability justice.
Leah’s experience pre-disability justice
In the 1990s, I was involved in movements that predate disability justice but did have leadership and movement creation by disabled people of color—specifically the psychiatric survivor movement in Toronto, which is a movement of people who identify as mentally ill, mad, psychiatric survivors who are organizing around the conditions of our lives. Then, [most of] the disabled people I saw in Toronto in the 2000s were white…I had disabled people of color friends but disability was like a secret. We were all queer people with disabilities and we’d be like ‘Oh my god, you have fibromyalgia too? Me too! I don’t talk about it with anybody.’ There was so much shame—there wasn’t a movement or a culture or any kind of space to speak about our experiences as disabled people of color. It just wasn’t there.
Leah’s first Sins Invalid show
In 2008, I saw a promotion for Sins Invalid’s 2008 show and I bought a ticket. I didn’t tell any of my friends that I was going and I went by myself…I was blown away….There was this whole disabled and chronically ill and crazy and deaf universe. It was a very black, brown, queer, trans, sexy, dressed-up-for-the-show universe. I’m somebody who, like so many people, has felt that I have to closet my disability, hide it, apologize for it. [I used to think] it’s just this big embarrassing thing, and if I want everyone to accept me or if I want to have career, I just have to take care of it on my own and not bother anyone with it. [At Sins Invalid,] just the experience of being in this black and brown, disabled, queer universe that was sexy and full of pleasure and full of people relating to each other was a revelation.
Doing disability justice performance art
I remember asking Patty [Berne], [if] you’re trying to advance disability justice, why did you choose performance art? Other people would have said let’s do a workshop. And I really clearly remember her looking at me and kind of laughing under her breath. She said ‘you know Leah, I could try to talk to disabled white people and try to get them not to be racist ‘till I’m blue in the face. And I could do a million workshops for ablebodied radical people of color, trying to educate them about ableism and trying to get them to care about us….Or I could do a three-minute piece of performance art that really gets into people’s heads and gets in all of their dreams and nightmares and unspoken thoughts about disability and racism and ableism and I could just fuck their shit up. I’m gonna do that one.’
Learning to be unashamed of disability
To create intersectional disabled art as a queer femme of color, I needed Sins [Invalid] and I needed the cultural labor of Patty [Berne] and Leeroy [Moore] and so many other people so that I can be tell the story and it won’t be received with silence or ‘poor you, that’s so inspirational.’ Creating space to tell disability justice stories and telling disability justice stories is a way that we remake the world. It’s a way that we do disability justice activism because we are creating space to show different ways to be disabled, sick, neurodivergent, and deaf people of color. We are creating space for other disabled black and brown queer folks to be like ‘oh my god, that’s my story and I can tell it and I can ask for what I need! I can create the movements that are going to save my life, that aren’t going to leave me behind.’
I am for a world where survivors know that we are good at things (which is also a crip politic), where survivors know that we have incredible skills to remake the world and we’re gonna do it….So in my decolonized disability justice future, I want worlds where there is no right or wrong way to have a body. We get to be born as all of the multiplicitous bodyminds that we are. I want a world where disabled, sick, and neurodivergent, and deaf folks people get to choose. I want a future where the abuse of disabled children is over….I want reparations for medical abuse of Black, brown, indigenous, and disabled people. I want the survivors of the Tuskegee syphilis medical experiments, and every other racist medical form of abuse to get compensation….I want an end to institutionalization….I want a future where the idea of care is decolonized from the ways it is seen as shameful and weak and less than to one where we have sophisticated care economies where everybody gets the care they need where everybody is able to offer care in ways they are able to….I want caregivers to be seen as the skilled geniuses that they are and to be compensated for their work….I want cultural work to be paid as cultural work and not in this kind of feast or famine way but like you get paid just the way someone who is a health professional does, just like someone who is a project manager does. We all get paid, we all get the same amount of income. So that means an end to capitalism, that means that Indigenous people, Black people, diasporic people, people of all nations get to have control of our lands, get to create beautiful accessible public transit, buildings, cultural space, all of it. I want a decolonized revolutionary world where we are welcomed and thanked for being here. And I cannot wait for that world. I cannot wait for the sick, disabled, neurodivergent, and deaf folks who grow up in that world where they’ve only been known as gifts and as treasures and complicated, imperfect people who have what we need to thrive. Yeah, I want that future.
More from Leah
- Leah’s website
- Leah’s memoir Dirty River: A Queer Femme of Color Dreaming Her Way Home
- Leah’s edited collection (with Ching-In Chen and Jai Dulani) The Revolution Starts at Home
- Mangos With Chili
Projects and people discussed
- Disability justice
- Mia Mingus, Leaving Evidence
- Eli Clare
- Leeroy Moore
- Sebastian Margaret
- Patty Berne
- Psychiatric survivors movement
- Loree Erickson
- Sins Invalid
- Rodney Bell
- Harriett Tubman Collective
- Black Lives Matter
- Deaf Poets Society
- Creating Collective Access
- Allied Media Conference
- US Social Forum
- Stacy Milburn
- Danza Azteca
- Tuskegee medical experiments
- J. Marion Sims
- Independent living movement
- Frida Khalo
About Imagine Otherwise
Imagine Otherwise is a podcast about the people and projects bridging art, activism, and academia to build better worlds. Episodes offer in-depth interviews with creators who use culture for social justice, and explore the nitty-gritty work of imagining and creating more just worlds. Check out full podcast episodes and show notes at ideasonfire.net/imagine-otherwise-podcast. Imagine Otherwise is produced by Ideas on Fire, an academic editing and consulting agency helping progressive, interdisciplinary scholars write and publish awesome texts, enliven public conversations, and create more just worlds.
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Full episode transcript
Cathy Hannabach: [upbeat music in background]: Welcome to Imagine Otherwise, the podcast about the people and projects bridging art, activism, and academia to build better worlds. Episodes offer in depth interviews with creators who use culture for social justice and explore the nitty gritty work of imagining otherwise.
I’m your host, Cathy Hannabach. [music fadeout]
Cathy: This is the second of a two-part episode featuring the queer, disabled nonbinary femme writer and cultural worker, Leah Lakshmi Piepzna-Samarasinha. As I explained in the last episode, my interview with Leah was so flippin’ fantastic that it ran for several hours. And rather than try to cram all of that goodness into a single episode, which is a bit overwhelming for a podcast size, we decided to split the episode in two.
So, this is episode 62, and it features the second part of that interview. If you haven’t already listened to episode 61 with the first part of the interview, I highly recommend you stop this episode now, go back to episode 61, catch up on that first part of the interview, and then come back here, so you’re all caught up for today’s conversation.
In this second part of our interview, Leah and I chat about the past successes and current challenges of the disability justice movement, how to create truly accessible performance and art spaces, and why helping survivors remake the world is how Leah imagines otherwise.
[to Leah] So, you brought up your work with Sins Invalid, with Mangos with Chili, and particularly your longstanding work in disability justice movements. So, I’d love to kind of shift gears a little bit to talk about your work in those movements, and maybe how it spurred your forthcoming book, which I’m very excited is coming out in the fall, right?
Leah Lakshmi Piepzna-Samarasinha: Mmm-hmm. Yeah, it’s coming out—so, as of right now it’s called Care Work: Dreaming Disability Justice Culture, and it’s coming out on Arsenal Pulp Press in October 2018, and I’m super excited.
Cathy: Perhaps just to start off—for those listeners who aren’t familiar with that term, or maybe aren’t familiar with its difference from a disability rights framework, how do you define disability justice?
Leah: The term was created by five people in 2005, who were part of a group called the Disability Justice Collective. And they’re Patty Berne, Leroy Moore, Mia Mingus, Eli Clare, and Sebastian Margaret. And these were disabled Black folks, disabled Asian folks, disabled queer Black and Asian folks, and like, white queer and trans working class disabled folks. Disability Justice was created by intersectional disabled queer folks who were really sick of the single-issue white narrative and politics of the disability rights movement. Giving disability rights its due. Like, hey, we’re not saying we’re not grateful for the Americans With Disabilities Act, or, you know, ’80s, ’70s disability rights activism, for sure.
But I often say, like, disability justice is to disability rights as environmental justice is to the environmental rights movement. Environmental justice was founded by Black, indigenous, and brown people who cared about the environment, but were like, look, it’s not just about white people saving trees. It’s about being Native and having a uranium mine on your sacred land. You know, it’s about being Black, and everyone in your neighborhood in West Oakland has asthma. It’s about taking an intersectional perspective.
I want to quote Patty Berne, who’s a co-founder with Leroy Moore of Sins Invalid, and is the writer of Skin, Tooth, and Bone: The Basis of Our Movement Is People, a disability justice primer which just came out this past year, and which I really encourage people to check out. Patty says, “Disability justice centers the lives and leadership of people of color, of queer and gender nonconforming people with disabilities. IT IS”—and this is all in caps—“IT IS A MOVEMENT-BUILDING FRAMEWORK, NOT AN ACADEMIC THEORY. When people invisibilize the leadership of people of color, of queer and gender nonconforming people with disabilities, it’s not disability justice.”
It’s interesting to me, when you were like, “longstanding” and blah blah blah with disability justice, I’m like, oh my God. That’s part of where we’re at. Like, disability justice as a term was coined in ’05, we’re now in 2018, it’s been thirteen years. And, something I’ll say, that I think maybe we can come back to later a little bit more, is like, I feel like I’ve seen so many changes since I got involved. And I also am like, we’ve been around for thirteen years, and a lot of people are still being like “Disability justice, what’s that?” “Disabled people? I don’t—what?” “Ableism? Do you know—what is that?”
Sometimes, how I get involved—I wanted to share some personal story and then maybe I’ll jump back out to some more theory and framework. So, I’ve been disabled since 1997. I was born in ’75. And, I’ve been neurodivergent since I was born. And I’ve been active as a creative writer since the late ’90s. And I didn’t start creating and performing and publishing work about disability till 2009. Not really. And the reason for that is that, although in the ’90s I was involved in movements that predate disability justice but, you know, did have leadership and movement creation by disabled people of color.
I’m thinking specifically of the psychiatric survivor movement in Toronto, which is a movement of people who did all kinds of work but who identify as mentally ill, mad, as psychiatric survivors who are organizing around the conditions of our lives. I was very much in a place where it came to chronic illness, where the disabled people I saw in Toronto in the 2000s, they were white, they were all white. And I had disabled people of color friends, but, you know, it was like a secret. You know, we were all disabled, queer people of color with disabilities, but we were like, “oh my God, you have fibromyalgia too? Me too, I don’t talk about it to anybody.” There was so much shame, there wasn’t a movement, or cultural, or any kind of space to speak about our experiences as disabled people of color. It just wasn’t there.
So, my entry point into disability justice was, I moved to Oakland in 2007. I came back to the States to go to grad school, and to be in Oakland, and to be in QPOC artist community. And, right before I left, I had actually connected with Loree Erickson, who’s a white, disabled queer femme in Toronto, who’s really amazing, and she had kind of introduced me to her disabled queer arts and political community, and I was like, oh my God this is mind-blowing. But they were all white. You know, pretty much everyone in there was all white. And I was like, God, should I leave? They’re all disabled. But there’s all this QTPOC community in Oakland, ahhh, okay, guess I’m going there.
You know, for the first couple years I was in the Bay, I really didn’t talk about disability. Because there was like California sunshine and cheap organic vegetables, like, I actually had less pain than I’d had for a couple years. I really passed to a certain degree as able-bodied. Like, I was in this Oakland paradise of all these queer and trans POC collective houses, and art, and clubs. It was such a fun time. I was kind of having a second adolescence in a way. My abusive partner wasn’t there. It was sunny. There was the ocean. You know, there’s all this good food and art, and I was just like, yeah. Most of my friends really identified as able-bodied, and I was like, I just want to keep up. You know, I don’t want to talk about this.
And then in 2008, I saw promotion for Sins Invalid’s 2008 show, and I bought a ticket, and I didn’t tell any of my friends I was going, and I went by myself. And even before I saw the show, I was blown away because, as disabled queer people of color cultural producers, you know, it’s about what we create on the stage, but it’s also about that temporary universe that the two hours that you’re all in the theatre is.
And what I mean by that is that the first time I went to a Sins show, I walked in, you know, with my cane, and I wasn’t the only cane user. There was like 40 cane users. And they were like Black, brown, white, queer, trans. And then, there wasn’t one person in a wheelchair, there was like 30 people in wheelchairs and scooters and adaptive equipment. And there was a whole bunch of people signing. And there were a whole bunch of people where I was like, oh my God, you’ve got pain face. I know what pain face is, I have that face. You know, there were a lot of people who were clearly neurodivergent, or who were looking anxious or looking psychically different. There were people with lots of different bodies. There were people who were amputees. There was this whole range of disabled and chronically ill and crazy universe, and deaf universe, and it was a very Black, brown, queer, trans, sexy, dressed up for the show universe.
And, as somebody who, like so many people, had felt like I have to closet my disability. I have to hide it, I have to apologize for it. It’s just this big embarrassing thing, and if I want everyone to accept me, and it I want to have a career, I just gotta take care of it in a corner on my own and not bother anyone with it. Just the experience of being in this Black and brown queer disabled universe that was sexy, and full of pleasure, and full of people relating to each other, was a revelation.
And then, the show started, and part of the opening of the show is Rodney Bell, who’s a wheelchair using dancer and Māori artist, being slowly suspended 40 feet above the stage as Patty’s voice comes on and says, “Is this safe? Are you safe? Are you sufficiently insulated from us, the deviant, the disabled, the deaf, the non-normative? Are you afraid that you’ll become stained by our leaking needs?” And she goes on and just created this two-minute performance piece where she’s talking about all the ways in which eugenics and ableist colonial racism, and non-disabled fear of disabled Black and brown bodies, and the ways that we are institutionalized and pushed away, and how does society affect us. And then she comes back to talk about desire, and coming home to disabled Black and brown queer bodies, and I was crying, and I was like, I’ve never seen anything like this. I just got brought in. My life is changed.
A few years later, when I bad been invited to be a part of Sins, I remember having a conversation with Patty—you know, newly as a member of Sins, and people were like, oh “you’re in Sins Invalid, what is that?” And I’d be like, well, we’re a disability justice collective of disabled queer and trans, Black and brown people doing performance art about sex. And there’d be this like, really long pause a lot of the time where people would not know what to say, and you know, sometimes people would be like [imitates a condescending white lady voice] “Oh, that’s so wonderful!” And sometimes people would be like, “oh, there’s enough material about disabled people of color and sex for a whole show?” Like, really earnestly. [laughs] And sometimes people would be like, “why performance art?”
So I remember asking Patty—I was like, ok, we’re trying to advance disability justice, why did you choose performance art? Like, other people would have been like “Let’s do a workshop.” And I really clearly remember her looking at me and kind of laughing under her breath and being like, “You know, Leah, I could talk to disabled white people, and try and get them not to be racist till I’m blue in the face. And I could do a million workshops to able-bodied, radical people of color, trying to educate them about ableism and trying to get them to, like, care about us,” and she was like, “and I’ve done that too.” But she’s like, “Or, I could do a three-minute piece of performance art that just really gets in people’s heads, and gets in all of their dreams and nightmares, and unspoken thoughts about disability and racism and ableism, and I could just fuck their shit up,” and she’s like, “I’m gonna do that one.”
And, Sins has also done so much, like workshops and political organizing, and tool creating, around, like, here’s how you make a radically, cross-ability, accessible political action. Here’s access suggestions for a show or cultural event. We also kept the artistry and the performance art at the center as a form of doing cultural activism, as a way of fucking people’s shit up about ableism. And I would say that we’re doing that for people who are abled, for people who are disabled, chronically ill, deaf, neurodivergent, and also for people who’re in the middle area, who are like, “wait, am I—oh my god, I’m disabled, oh my God, my mom’s a polio survivor—oh my God. Oh my god, disability’s all in my life, I’m up in it.” Yeah, so that’s about my entry point. So, I watched the show, I had my mind blown, and then around a year later, Sins did an open call for new performers, and I sent in some stuff and they asked me to join them, and I’ve been performing with them ever since.
And it’s been such a learning curve, from the first show I was in, where I was so used to being in queer and trans people of color, non-disability-specific art spaces, where it’s like, we have no money, we have no resources. OK, we’ve got the queer club for one night. So we’ll show up an hour before, we’re gonna do all the tech. Yes, it’s inaccessible and it’s up two flights of stairs, but we’re—this is what we have, we’re just gonna make do, and do the show, and if you’re sick or having a panic attack, or you can’t get up the stairs, well, too bad. That was my experience, and, you know, a lot of it.
And with Sins, Patty was like, “OK, book off the whole week, because we do a tech week because we’re disabled, and Access-A-Ride is gonna break down or not show up, and someone’s gonna get sick, and someone’s gonna have a panic attack.” And I was like, oh my God. This is what it is to do cultural activism and political activism, where disability’s not an afterthought. It’s actually at the center from the beginning. The very first day of tech week, she was like, “OK, we’re gonna do an access check-in,” and I was like, what’s that? Everybody in this incredibly mixed-ability, mixed-disability group went around, and all of these like, more seasoned disabled artists said without shame, “OK, here’s what I need to be present in the space.” And my jaw was just dropped. And when it came to my turn, I was like, “uh, uh, I have fibro and I need a chair—but, you know, I don’t really need anything, I’m fine.”
But then as people kept going around, and without shame—and also not coming from a sense of entitlement—which I think, a lot of times when people hear, people who are new to disability justice as a framework, or who aren’t disabled, or both—see someone making an access request, they get their backs up, and they think it’s coming from this place of like, being a snob, or some kind of princess who thinks they’re entitled to everything, and that’s not where people were coming from. People were just like, “I’m disabled, I’ve got a right to be here, and I need a chair.” “I need you to not stand in the way of my interpreter when they’re interpreting for me.” “I need you to speak to me, not to my interpreter.” “I’m gonna be lying down in a corner being kinda weird, don’t mind me, that’s what I need to do.” “I really need people to be fragrance free, for real.” “You know, I need to empty my gray bag every hour. Please don’t look at me while you do that, but you can talk to me.”
You know, later on after the show was over, I remember a couple of people coming up to me, and being like, “That’s the most present you’ve ever been as a performer, that I’ve seen you.” And I was like, yeah, it’s because my whole body got to show up without shame. And, not immediately. It’s not like I just saw that and I was like, “ooh, I’m not ashamed anymore.” And that’s the thing too, I think sometimes people who are kind of like, dipping their toe in disability justice are like “oh, all you people who don’t have any shame,” and I’m like. no. I mean, people I know who’ve been doing this for 40 years still wrestle with shame, and still wrestle with self-love, and it is an ongoing process. An ongoing political process to love yourself, as a disabled, intersectional person of color, for sure.
But, that space created the cultural container where I was able to start doing it, and what I said at the beginning of answering your question, where I was like, I’d never written about disability in my life before Sins. Culture creates culture. Back when I was starting as an artist, and it was a period of time where it really felt in Toronto like there was straight and homophobic people of color art space, on the one hand, and white, racist queer art space on the other. In order for my writing to have the audience that it needed to have, and for me to be able to do it, I needed to come together with other people, and make queer and trans people of color art space. And similarly, in order to create intersectional disabled art, you know, as a queer femme of color, I needed Sins. And I needed the cultural labor of Patty and Leroy and so many other people to create that container, where I’m like, oh, I can tell this story and it won’t be received with silence, or “oh, poor you,” or “That’s so inspirational!” Creating space to tell disability justice stories and telling disability justice stories is a way that we remake the world, and it’s a way that we do disability justice activism, because we are creating space to show different ways to be disabled, sick, neurodivergent, and deaf people of color. We are creating space for other disabled Black and brown queer folks to be like “oh my God, that’s my story,” or “That’s part of my story, and I can tell it, and I can ask for what I need, and I can create the movements that are gonna save my life, that aren’t gonna leave me behind.”
Cathy: What are some of the disability justice organizations or projects that you’re really excited about right now?
Leah: Deaf Poets’ Society is an incredible deaf and disabled literary space online. The Harriet Tubman Collective is really important. It’s a collective of Black disabled and neurodivergent folks, they’re doing incredible work, and one thing I know that they have talked about in their manifesto is, they really named, they were like, yeah, “We’re named the Harriet Tubman Collective because Harriet Tubman was a disabled Black abolitionist feminist freedom fighter.” And, in their first statement, one thing they called on was they were like, “hey, Movement for Black Lives, there’s ways in which ableism and disabled Black people are marginalized in the Movement for Black Lives, we need to change this.” That’s not my movement space, but it’s a movement space that I want to name and bring in.
And then, Creating Collective Access, which was a space I was part of creating with other disabled folks of color in Detroit at the Allied Media Conference and the United States Social Forum in 2010. Where, as disabled people of color, who were all about to go to this big-ass giant semi-accessible not really social justice space, we were all like, oh my God, there’s not gonna be any access, we’re gonna die. And then, we were like, what if, instead of kinda like tugging on the sleeve of the organizers—we’re gonna do that too, and we’re gonna call for access on a mass scale—but what if we create a group where, as much as we can, other sick and disabled folks find each other, and we figure out ways to do mutual aid to each other?
Cathy: It sounds like just in your own personal experience with the disability justice movements, you’ve outlined so many tremendous gains and transformations that the movement itself has produced, and those extend beyond your personal involvement obviously, as well. I’m curious about challenges, or maybe things you’re excited to tackle for the future, with regards to the disability justice movement.
Leah: First I want to say, like, success-wise, I think that disability justice has grown beyond, I think, a lot of people’s wildest dreams. I think some of the successes are that there are a lot more disabled Black, indigenous, and brown people who are finding each other, claiming disability, as a space of organizing, as a cultural and political community. When I look at the number of people who are in a jam, and who are like, “I need someone to give money to my Indiegogo for my medical costs,” or, “I need people to bring me soup,” or like, “Here’s the meal train,” I think about when I was disabled in the ’90s, and not only did those pieces of technology not exist, but when I was sick, my political collective was just like, “Oh, you can’t do the mailing? Well, too bad!”
And really the only person who helped me out with food was my abusive partner. I’m not saying that we’re out of the woods and that that kind of dynamic doesn’t happen, but I see so much more of it being a cultural norm in social justice communities, and other spaces, where people help each other, and are like, “everyone throws in 5 bucks this fundraiser,” “OK, so-and-so’s sick, who’s bringing the soup this week?” I think there is so much more understanding that, especially as systems fail us, and as the government is bankrupt, that we just have each other to care for each other. And I think that people are really doing a lot of experimentations in how creating collective access is not separate from activism. It’s what has to be there for activism to happen. I think about that as a success.
Culturally, you know, I talked about before Sins I didn’t write about disability. When Bodymap, which is my next-to-last book, came out in 2015, which was a book of poetry that had all my pieces that written for Sins, lots of disabled art. When I went on tour with it—like, a couple years before that, like, I’d be doing a gig at, you know, a college, or another space, and someone would be like, “oh, what do you want to do?” and I’m like, “oh, I want to do a disabled Black and brown queer writing workshop,” and like, no one would show up, two people would show up. People would be apologetic.
When I went on tour with Bodymap, when I did that workshop, the room would be full. And it would be full of queer people of color being like, “yeah, my mom’s a farmworker, and I want to talk about pesticide exposure in my life, and how that’s manifested as chronic illness.” Like, “I want to talk about intergenerational trauma and how it plays out in PTSD and disability.” There was all of these movement spaces that have been created. That’s a big win. There’s a group called BAD CRPL (?), Bay Area Disabled something rising in power—I’m messing up the acronym, but it’s a new disability justice political collective in the Bay Area, and my friend and comrade, the disabled Korean queer writer and activist Stacey Milbern is a part of it.
And, you know, one of the first times that 45 was trying to dismantle DACA, and there was a big fight back protest the day after, Stacey sent me this video, and she’s like, “You gotta look at this moment!” And, you know, I was looking, and the video was of this young, brown speaker, on the mike, before the march started—first of all, she was saying, like, “Yeah, so, the space at the beginning of the march is for disabled people, elders, and undocumented people. Please take your space, this is your space.” I’m gonna tear up! She was like, “We’re gonna move at the pace of the slowest people.” And, as a disabled person who for years has ended up at the end of the march because the march moved faster than me, and it’s been me and the other people in canes in the back, or we just don’t show up—I was like, this is a 16-year-old who gets it? Holy shit, we did it.
And then Stacey was like, the Danza Azteca community, which is, you know, indigenous Mexica dancers who often open political spaces in the Bay Area, and who often burn medicines like sage and tobacco. For years, I’d seen, in Black and brown movement space in the Bay, there’d been this tension between people who wanted to burn medicines, and Black, indigenous, and brown people whose disabilities meant that they couldn’t be around fragrances, being like, “oh my God, if I go to another demonstration where there’s all the sage in the whole world, even that will make me sick. Ah, I’ve gotta stay home, I feel so awful.”
There was a moment in that march where they were like, “OK, so the Danza Azteca community is gonna hold the medicine, but they’re not gonna burn it, in order to make sure that everyone who’s disabled can stay.” And I was like, oh my God. Not everyone’s gonna understand what a big deal that was. That was so many years of organizing to make that moment happen, where everyone got what they needed. And where disabled, indigenous, Black and brown people didn’t have to go home or not go to the demo, and where the medicines could still be there. That’s disability justice.
So yeah, I mean, I think we’ve got this cultural work, we’ve got people caring for each other. We’ve got people creating really creative and innovative disability justice political actions. I want to shout out one more, which is that, when the wildfires happened on the West Coast this year, and I was in Seattle, and I was so sick, and everyone was so sick. Able-bodied people were sick. This thing happened where disabled people were the ones—particularly people who are chemically injured or part of the multiple chemical sensitivity community—we already had the skills we needed to survive this.
So, all of this ash comes in, all of these toxins, you know, the air quality index is in the red or the black day after day after day, and we were like, “Oh, we already know about masks. We already know about respirators. We already know about detox herbs. We already know about drinking water. We already know about air filters.” And we shared our disabled knowledge with all these people who were being affected. My friend Naima Niambi Lowe once said, you know, “Disabled people have already survived the end of the world.” Like, we already know how to survive the end of the world. We have skills for everybody else who’s surviving it.
Lightning Bolt, which is another disability justice collective in the Bay, they did an action called Masks For The People, where they were like, we’re gonna raise money to buy all these respirator masks, and specifically get them to houseless communities of people in the Bay, who don’t have shelters besides tents, and who are really being affected by the smoke, and we’re gonna get them these masks so they can get through. And I was like, fuck, we are gonna save each other’s lives. So, this is all the good stuff.
And the challenges would be—I’m in the process of writing a piece called “Everybody Loves Disability Justice, Nobody Wants to Do it.” Which is definitely my working class, central Mass sarcasm. I also see us being in a movement moment, where on the one hand, a lot of people, including people who don’t identify as disabled who are social justice activists, have started to get the memo, and they’re like, “Disability justice, OK!” And I also see a lot of people in social justice movements slapping disability justice on something, and they have no idea what the hell it is. And the actions are still inaccessible. They’re still planning an 8-mile march. There’s still no care attendants, no wheelchair access, no fragrance free, no interpreters. There’s still like, “Oh my God, this stuff costs money? There’s no way we can do that.” There’s still this marginalization of disabled lives, experience, skills, and needs.
We want to be in leadership, and when we’re in leadership, the movement looks different. It moves slower. It moves faster in different ways. It sounds different. It walks with a limp. It’s like, “oh, everybody got sick, so we’re gonna have to reschedule.” It’s all this stuff. Most people are not actually able-bodied people with no commitments. Most people are elders, or parents, or they’re working three jobs, or they’re sick or they’re disabled—all of the above. And when you move at the speed of slow, you actually make room for many many, many more people to be part of a movement.
Cathy: I think this is a really nice transition into my last and my absolute favorite question that I get to ask guests [what kind of a world do you want?]…
Leah: I am for a world where survivors know that we are good at things, which is also a crip politic. Where survivors know that we have incredible skills to remake the world, and we’re gonna do it. You know, one thing I learned from Patty Berne as well, where she made the simple and radical statement, she’s like, “Disabled people are part of human existence, there’s always been disabled people. We’ve always existed.”
And, you know, the disabled Cherokee scholar and poet, Qwo-Li Driskill, I remember hir saying once, “You know, in the Cherokee language pre-European colonization, there were all these words for disabled bodies, and none of them were negative. They’re just different ways bodies are.” So, in my decolonized disability justice future, I want worlds where there is no one right or wrong way to have a body. We get to be born as all the multiplicitous bodyminds that we are. I want a world where disabled, sick, and neurodivergent, and deaf folks can get to choose. I want a future where the abuse of disabled children is over.
Where medical stripping, which is a practice that still happens, where disabled young people are brought into teaching hospitals, stripped naked, and made to stand there while medical students observe their deformities, I want that to be over. I want reparations for medical abuse of Black, brown, indigenous disabled people. I want the survivors of the Tuskegee syphilis experiments and every other racist medical form of abuse, I want us to get compensation. And I want that repair—that can happen monetarily, that can happen so many different ways. I mean, we know that the quote-unquote “father” of modern gynecology was a white, racist disgusting man who performed unconsensual experiments on enslaved Black women. Those descendants deserve money and justice.
And part of that justice is also that we re-create the health complex so that as sick, disabled, neurodivergent people, and as all people, we get exquisite medical care that is actually looking at and listening to disabled people as resources, and as experts, not just as subjects that are experimented on. Yeah. I want an end to institutionalization. You know, the independent living movement was created by the disability rights movement, as a move to get disabled people out of where we were warehoused and locked away in jails and nursing homes and institutions.
And what disability justice has said, has been, “That is amazing, and also, many of us will never fully be independent. We actually need other people for care, and actually most people need other people for care.” I want a future where the idea of care is decolonized from the ways in which it is seen as shameful and week and less than. One where we have sophisticated care economies, where everybody gets the care they need, everybody’s able to offer care in ways they are able to.
Where we see an end to the ways in which people who are paid to care are most often Black and brown immigrant women who are paid little to nothing, and who are in terrible spaces when it comes to immigration, often. I want caregivers to be seen as the skilled geniuses they are, and be compensated for their work, and I also want people who are caring for each other for free to—I want for it not just to be the disabled Black and brown femmes who always are like—I’ve gotten up from projectile vomiting to help somebody. And that’s a beautiful thing that disabled femmes of color do. But I actually want it so that everybody actually offers care, and it’s not just the feminized who remember.
I think a lot about how in my dream world, as a disabled artist, I would have guaranteed annual income. And I would have guaranteed exquisite healthcare that I choose. And I would be able to know that I had housing, shelter, food, pleasure. To be a writer. From bed. The way that I am a writer from bed. I am following in the tradition of Frida Kahlo and many other disabled queer writers and cultural workers of color in writing from my bed. And I want to be paid for that instead of what I’ve had to do for most of my life, which is always be hustling money and, you know, working my ass off to scrape by.
And I want that for everybody, I don’t want just that for me. I want cultural work to be paid as cultural work. And not in the kind of feast or famine way, but like, yeah, you get paid just the way someone who is a health professional does. Just like somebody who’s a project manager does. We all get paid. We all get the same amount of income. So, that means an end to capitalism. [laughs] That means that indigenous people, Black people, disasporic people of all nations get to have control of our lands. And we get to have beautiful, beautiful accessible public transit, buildings, cultural spaces, all of it.
I want a decolonized, revolutionary world where we are welcomed, and we are thanked for being here. And, I cannot wait for that world, and I cannot wait for the sick and disabled, neurodivergent, and deaf folks who grow up in that world, where they have only been known as gifts and as treasures, and as being able to be complicated, imperfect people who have what we need to thrive. Yeah, that one. I want that future.
Cathy: I want that future, too.
Leah: Thank you.
Cathy: Thank you so much for being with us, and giving folks so many different ways that they can imagine otherwise.
Leah: Thank you for having me.
Cathy: [upbeat music in background] Thanks for listening to another episode of Imagine Otherwise. Imagine Otherwise is produced by Ideas on Fire and this episode was created by Christopher Persaud, Rebecca Reynolds, Michelle Velasquez-Potts, and myself, Cathy Hannabach.
You can check out the show notes for this episode on our website at ideasonfire.net where you can also read about our fabulous guest as well as find links to the people and projects we discuss on the show. [music fadeout]