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Introduction and interviews by Jody Chan.

 

As disability justice artists and organizers, what political work is uniquely possible through art? How do we cultivate intimacy, sustainability, and interdependence in that work? What does it mean to build our own disability justice traditions and lineages?

In this series of interviews, I had the privilege and honour of learning from three brilliant queer and trans BIPOC disability justice artists and movement workers (a term I learned from Leah Laskhmi Piepzna-Samarasinha in this interview, who in turn learned it from Stacey Milbern). Leah Lakshmi Piepzna-Samarasinha, Cyree Jarelle Johnson, and Thirza Cuthand — three artists whose work I have often turned to for care and guidance in my own artistic practice — weave a crip magic web of wisdom, vulnerability, and resistance.

“My work cannot be remembered or contextualized without those who will need it, love it, tear it to shreds, hate it, but need it all the same,” writes Cyree Jarelle Johnson. We share these interviews in the hope that they will sustain your disability justice dreams, your love, your survival, your resistance, in the ways that you need.

 

LEAH LAKSHMI PIEPZNA-SAMARASINHA

 

1. How have your practices as an artist and as an organizer informed or transformed each other? As an organizer, what political work do you feel is uniquely possible through art?

When I started out as a young activist in the early to mid 90s, I went really hard and so did everyone else I knew. I joke about how my old calendars from back then often show seven meetings a week, and I'm not kidding— sometimes there were more. I was constantly organizing, marching, wheatpasting, spraypainting.

 

Then I got really acutely sick with CFIDS and fibro when I was 22, and was also dealing with mental health crisis times as I faced my childhood sexual abuse history. And I pretty much got abandoned by most of my activist friends – they didn't get it, they were angry I wasn't able to do a million tasks or be this rock-of-the-movement young femme of color activist anymore. As I moved into a disabled 20s, I continued to be too sick to do the kinds of activism I'd done before. I was really in “to exist is to resist” mode— I was struggling to eat, to keep a roof over my head, to work as someone with very limited spoons who was barred as an immigrant from accessing state systems. All of this was in like 1998, when nobody I knew in the POC anti racist and anti prison movements I was in were talking about disability.

 

Even though I had almost no disabled friends or peers who I could talk to about the ableism in the ways we were conceiving of activism, I moved into being a cultural worker as one of my roles in the movement. I was like, I can't do the marathon marches and I'm too scared of getting made even more sick if I get exposed to tear gas (which was everywhere during the big anti globalization mobilizations of the late 90s, like Quebec City) but I can write our realities, I can write poetry about colonization and war and racism and abuse and survival, I can be the poet on the strike line or at the benefit, I can write “how-to” articles and essays documenting our movements and moments. I'm really proud of myself that even as a disabled 20 year old, before any kind of contemporary DJ community, I figured that out. And this was in the late 90s, when there was a new, third wave of radical young BIPOC organizers coming of age and revitalizing movements, and part of what we were doing was insisting that cultural work counted as a form of activism. This is something that no one I know questions now, but back then, it was really radical to say that having hiphop and spoken word at the rally was “Real activism”. I remember these old Marxists yelling at us that “that wasn't how you had a serious rally!”

 

When I think of some of the first places my activism and my cultural work came together, I think of being a 24 year old, very crazy, very sick, very poor femme of color, at Psychiatric Survivor Pride Day— which was an annual gathering, organized by and for psychiatric survivors, lead by the anchor organizing of Lilith Finkler, an incredible working class Arab Jewish femme psych survivor and community organizer. We had an annual, huge, beautiful march of Crazy people, almost all of whom were poor and many of whom were BIPOC, in the street without a permit, holding signs that said PROUD TO BE CRAZY and HOMES NOT HOVELS and holding these black balloons with gold lettering someone had gotten a hookup to make that said NO FORCE, against forced treatment and medication laws. I remember taking the megaphone, one of many people in front of a SRO where many psych survivors lived, which had been torched by a greedy landlord and several people had died— and just channelling all this testimony and poetry. It was a real Crazy sick witch femme of color poet moment. And it was this example in my head, about how witness, and story, and speaking story and truth to and with the community you are a part of and love, can heal things, transform things, can matter.

 

And that's basically been it since. Like, I feel cautious about calling myself an “organizer”. I've done it, but recently I've come to prefer the term “movement worker”, which I learned from Stacey Milbern. Because I have friends who do specific kinds of political organizing that is very on the ground, door knocking, etc — and I have respect for that labor, and for the ways I've heard some of them be like “anyone can call themselves an “organizer/activist” these days!” And, I also think as disabled people, as disability justice community and movement people, the ways we do and conceive of “organizing” really crip what organizing is. I remember years ago, someone joined Sick and Disabled Queers, which at the time was very vibrant, with lots of people constantly posting and discussing things and problem solving and checking in, and was very, “I don't see a lot of real organizing going on here!” And we were like.... yes it is, but it's sick and disabled organizing, not Saul Alinsky. And one of the ways I have consistently seen disability justice minded people do organizing is through cultural work. Sins Invalid, which has one of the broadest reaches and impacts as a disability justice organization, is primarily a performance art organization. I've told the story a lot, of talking with Patty and asking her why she'd chosen to use performance art to advance DJ, instead of doing a workshop or something, and her laughing and talking about how she could do workshops til she was blue in the face to convinced white disabled people to not be racist, or abled BIPOC to give a shit about us— or she could do a three minute piece of performance that engaged with everyone's dreams and nightmares and stories about disability, and change the world that way. And it has. And it, I think, has specifically had a huge impact on other disabled BIPOC people. So many BIPOC krip people I know had life changing moments and got jumped into identifying as disabled and finding disability justice, through watching Cara Page pull a scroll of ableist words out of Leroy Moore's mouth while he was kneeling naked on stage and her saying, “Have you been called sick? Crazy? A disease? A punishment from god? In need of a cure?” You don't get that from reading a textbook. You get that from connecting with story.

 

And as someone who's moved into being a poet, an essayist, and a memoirist who tries to capture my own and others’ disabled and neurodivergent femme of color experiences, I'm moving in that lineage. I think recording our histories is always important. I also really, really think my DJ focused works, Tonguebreaker and Bodymap and Care Work and Dirty River in particular, can function as “communities in your pocket” for people. If you're isolated from other SDQTBIPOC, you can read this book and there we are! I was a nerdy, neurodivergent weirdo of color who definitely survived by carrying library books around as friends, and I'm proud to do that now, too. And my hope is that not only will these books be places where people can see themselves, where they can have that “you just wrote a story I've never seen written down, from my life” moment, but that it will, through the possibility modelling, encourage people to write, create, draw, make, organize, speak, survive. And that is a form of organizing.

 

One last thing I'll say is, I'm known as this “transformative justice” person, right? And it kind of makes me laugh, as much as I have put a lot, a lot of work in over the years. I've taught workshops and held or co-organized community accountability processes and answered a lot of late night emails and phone calls and was a traditional anti violence worker for ten years. But one of the main contributions I've made has been as an editor and cultural worker, as one of the people who conceived of and co-edited The Revolution Starts at Home, which started as a zine of stories by people who'd survived abuse within activist communities and then expanded to contain stories of CA/TJ interventions — ones that worked and ones that didn't, and tools — and then became this zine that ate Detroit because it was 108 pages full sized, and then it became a book. Sometimes I'm asked to be on a panel or something and it's interesting because I think people have this idea that a “TJ organizer” has to look a certain way; to be someone who lectures and posts about it and educates and organizes a lot of processes and started a nonprofit. And I think that feels very inaccessible for a lot of people. We're always saying “We need more people to actually just start trying to TJ!”- which I agree with, but I think also, instead of yelling at people to “just do it!” we need to look at the reasons why there are accessibility barriers to people trying it. People don't want to fuck up and hurt people, they're afraid of the vicarious trauma to themselves or igniting PTSD as survivors, they also don't know if what they do to intervene in violence/abuse without the cops “really counts” as TJ. Shit, a lot of the people I know who are intervening in violence without cops on a daily basis are a lot too hood for those panels and or will never be invited because they're not in a nonprofit or lecturing on college campuses, or are busy or sick or private about it, or the intervention is real quiet and needs to stay that way. But anyways— I think one skill I bring is being like, there's not one way to do TJ. The only way to do TJ is not running interventions all by yourself. You can collect stories and resources and share them, as an editor or curator. You can write or edit a zine or a poem or a cartoon. You can make different kinds of art – I am thinking of someone like Christi Belcourt's [Walking With Our Sisters] exhibit of moccasins made in memory of MMIWGTS. You can be a supporter. You can be a mentor. You can learn, you can teach, you can make some soup.

 

2. Your writing moves across genres — poetry, memoir, essay. How do you relate to these categories, and how do you know when something wants to be expressed in one or another?

I'm on this DIY writing residency and i've been thinking a lot about cripping writing practice this week. Poetry is where I started and poems come in a very specific way: they descend, they start talking to me, I write them (or yell them into my phone while I drive or am at stoplights, something that gives my partner a heart attack.) They sit there and ferment. I come back and go, wow, I have 31 poems. Poems are a very crip, accessible writing practice for me and many other people. They come in a very Crazy, autisitc space of words descending. It's not a decision, they just show up. I've talked a lot about how poetry is accessible class wise— you can write them on the bus, in the bathroom stall on a break. They're where I started. They also, in the Jordanian tradition (by which I mean June Jordan) are focused around the revolutionary power of truth telling, and “maximum impact, minimum words.” This makes them accessible. When you are low spoons, you can still write a poem- it doesn't take months to write a poem.

 

I started with poetry, but I've always been a wild autistic monologuing aunty storyteller with lots of stream of conscious— something I am starting to reclaim as a genre, not as a liability I was embarrassed about. I didn’t think I could write fiction or nonfiction for years, because those forms had always been presented to me in english class as very complicated, kind of like math— you needed plot, dialogue, all these things. And then my best friend looked at me and said, but you tell stories. And I started. My essay writing started that way, and honestly, as kind of scut work— I didn't think of it as writing with craft the same way as my poetry, I thought of it as work that needed to be done, service work to my community. Most people don't know this, but some of my first published writing was journalistic in prison justice papers: Prison News Service/ Bulldozer community News Service, where I worked for free as a writer and editor and shitworker for a couple years, and way before that I was an intern at the free weekly rag in Worcester— and I just viewed it as hammering out the news and resources people needed. Then I realized I could put my sarcasm and sense of humor/ cracked view of life into the writing, and lo and beyond, a career was born, kind of. But I didn't go to school to be an essayist or anything else and it's still kind of a surprise to me that I am more known now in some circles more for my essays than as a poet.

 

And with the memoir, that's a whole other thing, a concentric circle overlapping poetry and memoir. I have always written out of my life, to document, to record, to leave evidence, to respond to. Dirty River took ten years partially because I was teaching myself how to write memoir as I wrote it. I started out wanting to write funny stories, and then realized I was writing survivor possibility models. My memoir contains poetry, elements of essay, hybrid forms and storytelling. There’s art and craft, and I am also always motivated by a bit of desperation to record, so our stories aren't forgotten, As disabled BIPOC writers, we are writing to reach to each other, to build survival models. I'm in the early to mid stages of working on what may become my second memoir and it's going to be really different than Dirty River was— I am plotting it out, I have an outline and notecards of what scenes I need to write.

 

And I was re-reading Kiese Laymon's Heavy and it came to me that memoir is a genre that is so deeply steeped in disability. Because it's about memory, right? Memoir writers are always questioned, and stressing out about, are you telling the whole truth, what if people say that's not how it is, what if you can't remember? And when I was in MFA school, a lot of my teachers really stressed, there's one way to write memoir, it has to travel from point a to point b, there needs to be a plot, characters, a narrative throughline, a resolution. I fought with my teachers all the time because they told me that with Dirty River, I had to pick one storyline— just abuse, say, or mixed race racial formation— and just do that, and I couldn't whizz around in time. But my brown decolonial crip autistic fatigue brain crips that abled notion of memoir. I'm in crip time. I'm in the past, the present, the sick bed, the future, the memory. I remember things differently all the time. I write what I don't know. I imagine. I write in disabled mosaic— as Eli Clare writes. We write new genres.

 

3. Who do you consider to be part of your disability justice and/or literary lineage?

There's so many! But for some of the ones off the top: I relate to June Jordan a lot. I have learned so much from her, from when I was 21 and shoplifted my copy of Poetry for the People from the Barnes and Noble to when I was studying teaching at June Jordan's UC Berkeley's Poetry for the People after her death. Not only because she was a Black, queer, disabled writer but because she was an incredibly productive virtuouso— she wrote 28 books! Across all genres! Poetry, YA, essays, a goddamn opera, fiction, kids’ books! She did whatever she wanted! One of my 15 essays in progress is one called “Level It Up: Crip Literature Is a Multiverse.” I get really pissed when people— including some white disabled people new to the game— say “oh, there's such little disabled literature!” That's bullshit! And it's violent— in its erasure of wild disabled past and present in literary and cultural work by disabled, sick, ND, Deaf BIPOC. And this includes people who are systematically written out of what is considered disabled writing by white disabled gatekeepers, people whose legacies are critically important, like tatiana de la tierra, bryn kelly, sylvia rivera, audre lorde and more.

 

This is an excerpt of this essay:

“To claim an I don't give a fuck disability justice literary tradition that includes

aurora levins morales patricia berne leroy moore janelle monae beth brant stacey milbern park india harville nomy lamm laura hershey cyree jarelle johnson neve kamliah bianco mazique maria palacios carolyn lazzard the canaries billie rain qwo li driskill syrus marcus ware king khazm laura hershey dani motgomery eli clare sky cubacub eunjun kim stacey milbern jina kim audre lorde devi peacock shayda kafai amber vora luci marie powers gloria anzaldua sylvia rivera meg day rodney divertius sandra alland tourmaline bryn kelly textaqueen mia mingus tatianna de la tierra chrystos leslie feinberg naima niambi lowe amir rabiyah”

 

4. I love that in your website bio, you note that you are a “femme over 40”. What does that mean to you, and who do you turn to as elders or mentors in this work?

Thank you for this question! Like a lot of survivors, when I was in my teens and twenties, I couldn't really imagine living past 25. I had some mentors, but I really didn't have a lot of role models for what being an older, grown disabled survivor femme of color could look like. And then when I did live past 25, and then past 30, and then grew closer to 40, the need just increased. And I started both finding and holding on to elders, and moving into beginning to be one. When I say I didn’t have role models, I mean a lot of things, but I mean specifically that I really didn't have someone I could sit down and be like, what's the nitty gritty, how do you actually have this pleasurable, joyful, real talk not on some rich person magic cloud future over 40, without losing yourself or selling out or starving to death?

 

So part of what I do when I have femme over 40 in my bio is a testimony that yeah, I survived. And it's also a beacon, a sign post— like, here I am, this is one way being a 44 year old autisitc brown femme can be. And in my work, I am trying— still new at it— to share about that nitty gritty of what the daily of my disabled over 40 femme brown writer's life looks like, that is not utopic but is very pleasurable, that I needed to know about when I was 20, so I could imagine a future. I think both imagining a future for us, as all the adjectives I am, and speaking the truth of that future that is the present, is very radical— for disabled people of color, for survivors, for working class femmes who are not poor not rich.

 

I feel really blessed to have midlife and older peers who are disabled, femme, working class, BIPOC, in my circle of friends and comrades— there are a lot of us hitting 40 and above! My friends Chanelle Gallant, Lisa Amin, Syrus Marcus Ware, Nalo Hopkinson, billie rain, Rohman Gallangher, Tara Hardy. Patty Berne, Aurora Levins Morales, Leroy Moore and Eli Clare are all older disabled writers who have taught me a lot about aging as a disabled person.

 

5. How do you prioritize sustainability and interdependence in your art and organizing?

Love this question! Well, it's interesting. Something I'm finishing an essay about is how, ok, I wrote Care Work and was very much like, I wrote this from bed, I wrote this on the toilet and in the waiting room, I wrote this from a sick, slow, crip fast place, right? And then people are all like come here, come there, do 38 things, fly here, how come you haven't written me back yet?!?!?!? (imagine me laughing here.) And I'm like, I'M STILL THE SAME SICKO! Lol.

 

So, for example, I really resisted the urge to make myself nuts or physically destroyed touring Care Work. I didn't hit the road for four months. When Bodymap came out, I did six weeks straight because I was like, let's just go for it, and I don't regret it, but I was so destroyed at the end I barely remembered my own name. This time I “cripped the book tour”-- I did three small, slow tours, a week to ten days each, with a lot of rest in the middle of them, and I planned for rest time when I came back. It wasn't perfect, but I didn't feel destroyed after. And there were a lot of events where I was like, hey, I really wish I could do that, come to Arizona or Portland or whatever, but I've done exactly the amount of work I can do and I can't do anymore.

 

And the thing is, the book as of August 2019, 10 months after it got published, has been Arsenal Pulp's #1 bestseller in the US the whole time! Fuck Amazon but this book has been the #1 or top ten best seller in Dis Studies and Queer Studies A LOT. A LOT of what sold the book was my spoonie ass fan base— a lot of people came out to events in their area, but a shit ton of people just posted on IG about the book because they were in bed, just like me most of the time!

 

I know a lot of people who are all like oh yeah, sustainability, yadda yadda— but then there's this thing where it's like there's no other way to write or tour a book that's not a really abled one. I've had people I know be like “Oh you know, I'm doing 20 events in 30 days, you know how it is, right?” and I'm like I DO, but I WON’T/I CAN’T anymore. And I'm not coming from some trust funded, rich daddy/partner place where I don't have to work— I've just kind of barely made a lower middle class living in the last 3 years, I support a lot of folks in my community financially and have high monthly medical/disability support bills I pay out of pocket every month, I have to make a living. But I am invested (and not alone) in figuring out all the different ways with our different bodyminds we can create truly cripped out, sustainable ways of making money and getting our work out there. It doesn't have to look like one abled burnout way in order to be successful, it really doesn't. One thing I wish abled artists and activists would do in solidarity is a) listen to us b) also slow down so it doesn't feed into “oh, let's get the fast one over here, not the crip slow one.”

 

6. You’ve written about how making spaces accessible and engaging in cross-disability solidarity is an act of love; the idea that everyone deserves access and care is radical; and that a checklist of accessibility needs, carried out without deep love and care, is still empty. What do you think is the place of love in movement spaces?

I feel complex about love. I think we don't know what it really is. It's really easy to throw it around as a buzzword. To be honest, even though I respect the people doing it, when the “access is love!” campaign started, I felt salty about it. I absolutely believe that access can be a form of love, can be rooted in radical love for each other as disabled people. But the phrase itself is a little too pat for me. I was hanging out with another crip and we were like, access isn't always love, it's just access!

 

Because the thing is, when “love” actually means popularity or palatability to the abled imagination, that means both that some of us get to be “loved” and most of us are still monsters to them. I hold the painful critiques that many people have shared with me: that our ability to get access shouldn't be dependent on whether or not we are lovable or likeable. I also think that while I agree, obviously, in the power of community based DJ organizing to create care networks and collectives, I also think about bigger, structural things. Like, what about people who don't have a big circle of friends or loved ones, even a little bit? “The community” is not always going to come in and save the day. And, many people don't actually want their friends to help them take a shit, and that's not always internalized ableism! This is not to say, however, that our collective access work is bullshit or doesn't exist (I had one interviewer say “You talk a lot about collective access. How often does that actually happen, really?” in the most dismissive, disparaging tone. Despite there's like, four million examples of it in the book.) However, I am curious about, what would if be like we dreamed about what a disability justice replacement for SSDI and SSI and DSHS could be might look like, and if those models might be informed by DJ, community based care webs????

 

Like, one thing I've thought about a lot is, you know that book The Dispossessed? How everyone can just go to the storeroom and get clothing, or a book, everyone goes to divLab to get work assignments, everyone just goes and gets housing? Well, what if that was how accessing care worked— that you could go to some centrally organized, or locally organized, care center and access the exact care you needed? Because sometimes you really need someone who's not your friends; because care workers deserve payment and time off. We all just need to access it in a system not based on hatred, suspicion and gatekeeping of poor people and disabled people.

But in terms of, as Laura Hershey said, complicating when it is no longer simple, I say this:

For years, I was nominally out as disabled, but I did a huge amount of masking my disabled and nd parts (and my just plain parts) and automatically minimizing my needs (oh no, I'm fine.) I was the crip who leads the access check in but is all good. I was ashamed and didn't know I was ashamed. Like, for example, I'm sick so I can't work a 9-5 so I do workshops and trainings right— but I also have really debilitating anxiety which I had to hide for years (in order to stay in college) and which was dismissed and disrespected for years (for example, by an abusive work wife who told me I should just “try not being anxious”). So I have absolutely had real crazy town panic attacks while teaching classes online, leading workshops etc— and all I knew how to do was fake it. I taught some classes where no one saw I was grinding my teeth and crying and having hysterics, basically. This was all, of course, mixed in with general imposter syndrome about being a brown femme whose competency is always under question. It hasn't been until the last few years when, for example, I had crip friendship, with stacey, who is a genius, where she said, when I'd had a panic attack and had missed the train to our training, really evenly 'hey, what if you saw it like any other access need? I don't tell people I need to empty my greybag, I just do it. What if you said, hey, I need to take care of an access need, i'll be back in fifteen minutes?” And just that allowed me to open a door in my head where there is something besides hiding, or shame.

 

I think stories like this are examples of the complex nature of access as love, that go beyond the ways that phrase might sound like it’s simple. Every action up there was a complex access of disabled witnessing, understanding, alliance. It was not something that was bestowed on or given to me. stacey worked some crip magic that made me open to receiving it.

 

7. In the introduction to Care Work, you talk about not wanting to be seen as the face of disability justice. I really appreciated your commitment to crediting queer/trans, BIPOC, working-class sick and disabled movements for the ideas and practices that you share in your writing. At the same time, Care Work has been so incredibly impactful and transformative for so many people I know (including myself), across a huge range of movement spaces, in a way that’s very much associated with you individually. How is this feeling for you?

I feel great about this. I am really proud of what I pulled off. I don't have a problem getting credit for my work as a writer— especially as a disabled femme of color writer, who is often still overlooked and condescended to— when I write well and create a cultural work that impacts people. But I am proud as hell of what I pulled off. Because there's the book, and there's also the metabook of its impact and context. I said no to a Big 5, New York publishing house offer because they told me it was contingent on my being willing to “sell myself” as “the face of disability justice'-- this, in their eyes, new, wild movement. I feel excellent that Care Work is Arsenal Pulp’s #1 best seller in the US for the past year since it came out, that it topped the Amazon disabled best seller list and sold out its first printing in six weeks. I say all these things not out of ego but because honestly, most people don't know about them— disability studies sure didn't mostly care, except where individual Black and APIA disabled and ally femmes brought me to speak— thanks Jakeya and Jina and Simi and Akemi and Ronak! — and I think it's important to share that this wild disabled femme of colour mixtape of a book did this.

 

I feel really proud that I did things throughout the book coming out and being toured and talked about that worked to amplify the voices of other disability justice writers and activists. In my Seattle, Northeast U.S., and Toronto dates, I read and spoke with other sick and disabled BIPOC writers and organizers, including Carolyn Lazard, billie rain, Syrus Marcus Ware, Wy Joung Kou, Cyree Jarelle Johnson and Dori Midnight. I chose to organize launch readings at disabled and or BIPOC community spaces like the DIS Summit, Chai Chats Podcast (a grassroots reading series and podcast created by working class femmes of colour in Montreal) and Asian American Writers Workshop over reading primarily at bookstores (though Third Space and Left Bank really came through, and I want to thank all the indie bookstores who faced my book out and in some cases created queer disability studies sections, like Elliot Bay!) I wanted to “crip the book tour” and make choices as a disabled femme of color writer that said, hi, there's me and there's also this whole movement, let's celebrate this book and also let it coming out be a place where we can find each other and amplify the movement. I don't give a shit if the white disability rights establishment gets it or cares and they mostly are oblivious, condescending or just completely don't know what to say about it all— I DO care that many Black and brown folks I know have thanked me for creating a book has been a space for them to think about disability. I'm proud that crips read this book in the psych ward and the bed, about the person who brought me a loaf of tumeric sourdough to thank me. I'm also proud that I successfully fought and won to keep my weird, crip, Worcester MA/ brown Toronto sense of humor, style and slang in the book. I wanted this book to be a community in your pocket or your phone, the way many books have been for me.

 

My dream, which I believe is becoming reality, is to be part of a wild pack of slowness of BIPOC and ally disabled queer/trans writers— where we can have library sections and bookstore sections and classes. And I think this is happening, Cyree Jarelle and Leroy and Aurora and Disabled Voices and Lydia and

——

Leah Lakshmi Piepzna-Samarasinha is a queer disabled femme writer, organizer, performance artist and educator of Burgher/Tamil Sri Lankan and Irish/Roma ascent. The author of Tonguebreaker, Bridge of Flowers, Care Work: Dreaming Disability Justice, Dirty River: A Queer Femme of Color Dreaming Her Way Home (ALA Above the Rainbow List, short-listed for the Lambda and Publishing Triangle Awards), Bodymap (short-listed for the Publishing Triangle Award), Love Cake (Lambda Literary Award winner), and Consensual Genocide, with Ching-In Chen and Jai Dulani, she co-edited The Revolution Starts At Home: Confronting Intimate Violence in Activist Communities. Leah’s most recent two books, Tonguebreaker and Exploring Transformative Justice: A Reader (co-edited with Ejeris Dixon) were published in 2019.

 

Introduction and interviews by Jody Chan.

 

As disability justice artists and organizers, what political work is uniquely possible through art? How do we cultivate intimacy, sustainability, and interdependence in that work? What does it mean to build our own disability justice traditions and lineages?

In this series of interviews, I had the privilege and honour of learning from three brilliant queer and trans BIPOC disability justice artists and movement workers (a term I learned from Leah Laskhmi Piepzna-Samarasinha in this interview, who in turn learned it from Stacey Milbern). Leah Lakshmi Piepzna-Samarasinha, Cyree Jarelle Johnson, and Thirza Cuthand — three artists whose work I have often turned to for care and guidance in my own artistic practice — weave a crip magic web of wisdom, vulnerability, and resistance.

“My work cannot be remembered or contextualized without those who will need it, love it, tear it to shreds, hate it, but need it all the same,” writes Cyree Jarelle Johnson. We share these interviews in the hope that they will sustain your disability justice dreams, your love, your survival, your resistance, in the ways that you need.

 

 

CYREE JARELLE JOHNSON

1. On top of your writing and teaching, you are a founding member of The Harriet Tubman Collective (“a collective of Black Deaf & Black Disabled organizers, community builders, activists, dreamers, lovers striving for radical inclusion and collective liberation”) — and The Deaf Poets Society (an online journal of Deaf and disabled literature and art). How have your practices as an artist and as an organizer informed or transformed each other?

If there’s anything I’ve learned from working on Harriet Tubman Collective and The Deaf Poets Society is that I’m not an organizer, I’m an artist, and that’s ok. It’s a difference of temperament. Organizers, in my observation, have to mobilize large groups of people which can involve inspiration, fear mongering, manipulation, and consciousness raising in turn depending on the organizer.

 

Artists do those same things, but we do them alone. We can hope that we have the same mobilizing outcomes, but we often don’t because others aren’t centered at the moment of practice, even if they are centered in the delivery of the work. I’m the only one there when I am making art and there are few people around when making art space, so I can really dig into complex, contradictory, even problematic things to get where I need and make people look.

 

Organizers have to keep people working together and I have no such mandate. I am fine with the finite, the ephemeral. Projects don’t have to sustain themselves indefinitely. I don’t have to publish the “project.” Accepting that I’m an artist and not an organizer has given me the freedom to get messy with my practice, to not worry about digging my way out through the problem or issue I’m considering.

 

2. What does “radical inclusion and collective liberation” look like in your writing?

Hmm, well I guess it’s important for me to say that I was raised in the church and because of my ancestral spiritual practices I have accepted that I will always be *churched*, which definitely informs my writing and my thoughts on radical inclusion and collective liberation.

I make space in my writing for my own gayness, my contradictions, the things I love that I was taught to hate—chiefly sex, which is to say my body writ large. I love a fugitive pleasure. I love the pain associated with pleasure out loud in my work.

As far as collective liberation, I write about mass and populist movements. I was around for Occupy in Oakland and it really informed my early adulthood. I was also a member of Black Lives Matter. Those experiences catalyzed how so many of us think about collective liberation and their influence is probably the most clearly political part of my writing.

 

That said, I’m also queerspawn and my mother was a WLW organizer when I was a kid, so I have a cynicism to me. I know that no matter how much optimism we have as younger generations of sex and gender outlaws we have tried so much of this before and in some cases we are the reason we didn’t succeed. To come back to your first question, that’s why we need artists in the first place. Activists and organizers must look forward and keep morale up and shit. Artists look critically, interrogate, suggest. We aren’t bound by any covenant of positivity. The artist says It may not work, it may not have worked, but here’s another option or here’s what you’re missing or have missed.

 

3. Your writing moves across genres — poetry, article, personal essay. How do you relate to these categories, and how do you know when something wants to be expressed in one or another?

Genre is a myth. It’s a myth rooted in white supremacy, classism, and misogyny. Poetry is feminized and scorned. Fiction is the providence of the upper classes, and was made just for them the moment they had enough time to make and read a doorstop-length book.

The only way that I respect and recognize genre is the acknowledgement that poetry came first and will linger longest. That’s that on that.

 

4. What is your relationship with form? When do you turn to received forms like the sonnet, and what work is it doing in your writing?

My poetry seeks to appropriate white-coded poetic formalism. Form is the literary exaltation of European standards, and thus when one utilizes inherited forms there is an assumption of tacit agreement with presumed white linguistic supremacy.

But to what other ends may a poet engage with European forms? Meter, rhyme, and all other elements of form converge in my work to force the reader into the restrictions that limit my comings and goings. Form makes literal the stop and start, the unqualified no, and the denial of simplicity inherent to my black life.

I aspire to treat form like a Kardashian tans towards melanoma, or a like white poet writing under a suspicious nom de plume: I want to steal the beauty and abandon the burden. I employ form to make a mess of form. I write in form to blacken it with wink-and-nod hubris and a millennial eye. My poems consider what is useful, or even beautiful about the whiteness I was force-fed through the speculum orum of anti-black racism. It keeps only the pearls and casts the shells back into the sea.

 

5. You recently featured in I wanna be with you everywhere at the Whitney. What was your experience of being in that show, and how are you thinking right now about the ethics and challenges of navigating powerful art institutions like the Whitney?

I wanna be with you everywhere (IWBWYE) was INCREDIBLY BEAUTIFUL!!! Like truly a tear jerker. I saw disabled folks from far and wide that I adore, got to meet a personal hero of mine, and the low-stim room that they put together was an all time favorite.

It’s weird to see what happens when enough kinds of disabled people are in the room to actually get things *right*. It’s weird to not have to ask for any additional accommodations, but to know that you definitely can if you need some.

 

Re: the Whitney—money is ugly. There is no clean money. I feel this especially as a black person where so much of the wealth that circulates was built from the non-consensual labor of black people. So that’s always in the back of my mind. There is no radical money under capitalism and that’s that on that for me.

 

I say that as someone who does not yet have the luxury of saying no to money. I have bills to pay, and since I do not have familial wealth, I have to work to support myself. I don’t think I can minimize the harm, I can only be honest about the fact that by taking the money I am also complicit in the sanitization of that money. In putting a positive spin on something ugly.

 

6. In interviews, you’ve talked about the fact that sickness is not the only part of your life; and that sick and disabled writers write about much more than their disabilities. Can you share a bit about what (or whether) “disability art” and “disability aesthetics” mean to you, and how it impacts the creative choices you make in your own writing?

So I’m on the autism spectrum and I was diagnosed when I was a small child. Aspergers was what they called the way my brain works, but I’m aware of all the complications of that extremely political diagnosis. Hans Asperger was a nazi who decided whether autistic children lived or died based on the inherently racist concept of intellegence. Asperger’s is considered the “good” type of autism, the kind of autism that allistics want around.

 

That said, having an ASD diagnosis as a child is very stigmatizing. I had to be in special classes while other children did other things. I was frequently suspended, which was compounded by the fact that I was treated like a tall, androgynous, black girl who fit white people’s definition of fat. My mother was encouraged to mimic my facial stims to humiliate me. I was reminded that I was lucky that she hadn’t killed me early in my life (I was a biter of a serious sort).

 

I was neglected and that made me an easy target for predators. I don’t know how many times I’ve been raped or sexually assaulted in my life. I live with CPTSD and it has in the past really fucked up my relationships, most importantly my relationship with myself and belief in and of myself.

 

I think I’m sometimes confronted by the fact that I am a disabled writer who struggles to write about disability, like as a topic. But I’m also a disabled writer who writes through disability. Disability is the lens through which I see the world.

 

My first book of poetry SLINGSHOT [was] released from Nightboat Books in early September. The book may not be *about* disability, which is to say that it does not take disability or disabledness as its primary object for study, but it is about people living with addiction, CPTSD, growing up with an ASD, trauma of all kinds, familial neglect and abandonment, and shadow economies, which are all narratives important for understanding disability and disablement.

 

All of the main characters in the central poem are disabled in some way. They are also black, which can mean that they have not been allowed to foreground their disability. Not to go all JK Rowling, but I was always encouraged not to think of Lupus as a disability. This was particularly espoused by church people who told me that “claiming” disability was an affront to the power of God to cure anything and make anything happen. I think a great many black people struggle with talking about their disabilities for this reason.

 

7. Who do you turn to as elders or mentors in this work? Who do you consider to be part of your disability justice and/or artistic lineage?

Leah Lakshmi Piepzna-Samarasinha & Leroy Moore & Carolyn Lazard & Kay Ulanday Barrett & Essex Hemphill & Lydia Brown & Park McArthur & Alice Sheppard & Fannie Lou Hamer & Marlon Riggs & Constantina Zavitsanos & Kate Bornstein & Les Feinberg & Audre Lorde & June Jordan & Lorraine Hansberry & Fred Moten & Imani Perry & Eli Clare & Sins Invalid & Neve Be & Octavia Butler & Mattilda Bernstein-Sycamore & Harriet Tubman.

 

8. How do you cultivate intimacy and interdependence in your writing process? What is the role of community in your writing?

My work could not exist without work that was created when it was not yet a thought. My work can not be remembered or contextualized without those who will need it, love it, tear it to shreds, hate it, but need it all the same.

 

I’m in my first Saturn Return and it has been a reminder of how lonely I become when I don’t stay close to the communities that shaped me. Not all of them have labels or titles. I have to stay close to the communities that feel right, that feel me, where I can show up as my whole self, where I’m understood, welcomed, and challenged. Everyday I find out a bit more about who and what makes those spaces what they are, and become a calm and at peace and less alone.

——

Cyree Jarelle Johnson is a writer and librarian from Piscataway, New Jersey. SLINGSHOT, his first book of poems, is out now from Nightboat Books.

Photo credit: Richard Rivera

 

Introduction and interviews by Jody Chan.

 

As disability justice artists and organizers, what political work is uniquely possible through art? How do we cultivate intimacy, sustainability, and interdependence in that work? What does it mean to build our own disability justice traditions and lineages?

In this series of interviews, I had the privilege and honour of learning from three brilliant queer and trans BIPOC disability justice artists and movement workers (a term I learned from Leah Laskhmi Piepzna-Samarasinha in this interview, who in turn learned it from Stacey Milbern). Leah Lakshmi Piepzna-Samarasinha, Cyree Jarelle Johnson, and Thirza Cuthand — three artists whose work I have often turned to for care and guidance in my own artistic practice — weave a crip magic web of wisdom, vulnerability, and resistance.

“My work cannot be remembered or contextualized without those who will need it, love it, tear it to shreds, hate it, but need it all the same,” writes Cyree Jarelle Johnson. We share these interviews in the hope that they will sustain your disability justice dreams, your love, your survival, your resistance, in the ways that you need.

 

THIRZA CUTHAND

1. You’ve made videos, films, and even a video game that touch on madness, in relation to Queerness and Indigeneity. What are you working on right now, and how are madness and disability showing up in your work?

Right now I am working on a feature film script, madness isn’t specifically referenced in it although it has some magical/paranormal aspects to it. I’m also working on a webseries about going into space. That project is still being written but I was learning about madness and space travel and although no one has had to deal with a psych episode in space, there has been much discussion about what to do and how to prevent an episode. So far that seems to mean screening out people who have mental health disabilities. So I’m curious about mental health first aid in a long distance space mission. It’s also a webseries about Indigenous exploration, so it’s interesting. I’m still working on completing the bipolar video game, I want to get three more levels to it. I’m also working on a short about a medicine bundle which was in my family and which is still operating as a healing force which seems to come when needed. It helped my Great Great Grandfather Misatimwas survive a smallpox epidemic and being mortally wounded while leading the battle of Cutknife Hill. It also helped my Grandpa survive Spanish Flu when he was just a baby. It got buried with my Great Great Grandfather in an unmarked grave so that graverobbers wouldn’t steal it. But when I was having one of my first struggles with suicidal ideation as a preteen, my Uncle and Aunt were doctoring me and saw this bear cub roll into the room. The medicine bundle has a bear cub robe in it from my Great Great Great Grandfather’s pet cub. So it’s been this sort of healing energy that I think has helped our family survive some really difficult times, mostly relating to colonization. I think for Indigenous people, mental health crises are really indicative of the sickness of living with oppression. There aren’t any safe spaces for us, except maybe when we are in ceremony with each other. Even in hospitals I’ve experienced racism directed towards me from not only patients but also staff. So I believe in my family’s spiritual practices. I don’t really care if the medical world thinks that is magical thinking, I think there is magic in the world.

 

2. You’re currently being featured in the Whitney Biennial (congrats!). How is all of that feeling for you, and how are you thinking right now about the ethics and challenges of navigating powerful art institutions like the Whitney?

It’s been really unusual! I think in a lot of ways I expected more to change than what actually happened. It’s hard to say the ramifications of it since my work screens in late September there, at the end of the Biennial. So critics haven’t had a chance to tear it apart and say I suck yet. I thought I would get more attention in Canada for being in the Whitney but honestly not much has changed. I think ethically being in the Whitney Biennial this year has been hard because there is a war profiteer on the Board, so there has been a lot of political agitation to try and get him to resign. But the only person who can make that decision is him, and he’s not going anywhere. I’ve found the whole situation has really cast a shadow on the artists chosen for the biennial this year because we’re seen sort of as sell outs or something for not pulling our work en masse. A lot of the artists are emerging though, or just not very well known, so it’s way riskier for us to make that kind of move. I think a lot of people know it could be a career killer and make us get blacklisted if we decided to act in that way. Most large galleries are getting funds from something shady. It’s just really visible this year with the Whitney. I’m still trying to make it known that I don’t support blood money in the arts. But I’m also a really marginalized artist and I feel my voice isn’t heard as easily as others.

 

3. What is the role of community in your art-making, and how would you define “community”?

I started my practice being really individualistic. Honestly I think that had a lot to do with my social anxiety. I performed, shot, edited my work all by myself with whatever tools I had available. But as time has gone on I have become more accustomed to asking for help. I’ve been doing these 2 Spirit videos with other people in the community and they have been really fun. I’ve also started working with crews again for the first time since film school. It’s been really a relief to see a group of people work to achieve my vision for a piece. I can’t always afford to hire people, but when I can it’s been really lovely.

 

4. In your blog, you’ve talked about calling your film work “experimental” because you don’t know what other genre to put them in. What elements of your work do you consider experimental, and how does genre (or lack of it) inform the creative choices you make?

I think when I was first asked to categorize my films in a distribution spec form, I put down experimental and narrative because I just didn’t know which to pick, and it stuck. Most of them are very narrative driven but still use experimental and performance references to tell the story. My early work was usually made in my home with props and toys and so forth. And now I’ve become really enamoured of green screen. In some ways I love the campy artificial quality of green screen, and in other ways I just love that you can put someone anywhere with it, on any background. Sometimes I like picking some really annoying part of filmmaking and going overboard with it to make something weird and good. I think the experimental parts of my films are just working with the limitations I have, mostly budgetary limitations. Like using my body as a performance site. I really love monologues. I’ve been dabbling in dialogue a bit more. I think the genres I’m interested in really take from pop culture. I like horror, sci fi, fantasy and fairytales. I love porn too but I just don’t have enough sex in my life to feel like it’s something I could make honest work about.

 

5. Your work often makes use of comedy and laughter as a political tool to tell nuanced and loving stories about your community. What do you think is the role of humour in art and activism? 

I think humour is very incisive. Like, I think it opens a door for people to enter political and emotional landscapes of people who are different from them. It’s also medicine for people from my community. One time I got beat up when I was a teenager, and I don’t know, I guess I just needed to heal because I kept making jokes afterwards while we waited for cops to show up. The cops never showed, and it still took a few months for the PTSD to go away from that assault. But I think it’s common for Indigenous people to use dark humour to grapple with some of the violence enacted on us and on our communities and in our communities. It gives you control again in a way. I think also some humour is just really gentle and loving and bonding. Plains Crees are very funny people. If you hang out with a group of us it’s not uncommon to have side splitting belly aching fits of laughter.

 

6. Who do you turn to as elders or mentors in this work? Who do you consider to be part of your disability justice and/or artistic lineage?

I think I mostly turn to other friends, I grew up in the art community because my Mother (Ruth Cuthand) and my Father (Edward Poitras) are both well respected artists so they took me to shows and introduced me to other artists and we’d drop into their friends studios to visit when I was a kid. So I’m really a product of the Saskatchewan Indigenous art community. For mentors I met people like Maureen Bradley who taught me how to make my first video, and Shawna Dempsey and Lorri Milan, and Dana Claxton, whose work I really loved and connected with. I’ve been fortunate that most video artists I’ve admired I’ve been able to form friendships with. I also just went to see a lot of independent film as a youth, mostly art house stuff by people like Todd Haynes and other Americans. I find them to be influences more than mentors though, since I’ve never had a conversation with those filmmakers.

 

7. How do you prioritize sustainability and interdependence in your art and organizing?

I remember there was one period after a very traumatic hospitalization when I was young when I couldn’t produce work. It was at least two or three years long. I remember just feeling very numb and feeling this sort of horror at being blocked creatively. Since then I’ve just been willing to follow my instincts more and always have a few projects rolling around in my head. I’ve also been involved with Toronto Queer Film Festival here in Toronto where I’ve helped lead a workshop to teach new Indigiqueer filmmakers how to make videos at Trinity Square Video. I think it’s an ongoing process of helping emerging artists and also nurturing my own ideas by always being curious about the world, what is going on, the possibilities. I’m making more of a point to take in other’s work, going to galleries, screenings, reading books, watching television. I used to hate television but I’ve been realizing some fascinating storytelling is coming out of television right now. It’s really important for my creative process to also watch how other works are made. And music is a big part of my life, it always has been. I basically listen to music all day. I think short films and songs have a lot of common ground. Drawing links between all of these things becomes really heightened when I am having a manic episode, but even in a more stable time I have these threads between mediums that I notice. That’s really nice.

——

Thirza Jean Cuthand (b. 1978 Regina SK) makes short experimental videos and films about sexuality, madness, Queer identity, love, and Indigeneity, which have screened in festivals and galleries internationally. She completed her BFA majoring in Film/Video at Emily Carr University of Art and Design in 2005, and her MA in Media Production at Ryerson University in 2015. She has performed at Live At The End Of The Century in Vancouver, Performatorium in Regina, and 7a*11d in Toronto. She is a Whitney Biennial 2019 artist. She is Plains Cree/Scots, a member of Little Pine First Nation, and resides in Toronto, Canada.