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Cripping Resistance, Claiming Ourselves: Three Interviews with Sick/Disabled QTBIPOC Artists

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.


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


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