“I Can’t Make You See What I See”: Talking with Cyree Jarelle Johnson and Jesse Rice-Evans

"Writing about lupus is like writing about ghosts. What do you say about something featureless?"

Cyrée Jarelle Johnson and Jesse Rice-Evans are poets whose artistic and activist work has become central to disability justice and community building in the arts. Cyrée is a cofounder of the Deaf Poets Society, a literary journal that publishes work by d/Deaf and disabled writers and artists, and of the Harriet Tubman Collective for Black, Deaf, and disabled organizers. His first poetry collection, Slingshot, was released by Nightboat Books, in September 2019. Jesse’s debut full-length poetry collection, The Uninhabitable, was published by Sibling Rivalry Press, in March 2019. She is a doctoral candidate in rhetoric at the CUNY Graduate Center, where her research and pedagogy focus on disability and digital culture.

When I met Cyrée and Jesse in a coffee shop early last summer, it wasn’t the first time we had all been in a room together. Our paths as disabled writers had converged not long before, at Performance Space New York, though we didn’t all know each other at the time. As participants and/or audience members at “I Wanna Be with You Everywhere,” a series of performances and readings by and for disabled artists, we were all thrilled and comforted by the event’s too-rare commitment to welcoming, centering, and celebrating a variety of bodily needs, rather than simply accommodating them.

Watching Cyrée read from his debut poetry collection, with Jesse’s new book still fresh in my mind, I recognized an affinity between these poets. While they both are frequently outspoken about disability justice in the public sphere, their poetry resists not only the standard narratives expected of “disability literature”—such as becoming cured and overcoming limitations—but also the expectation that disability must be narrated at all. When I sat down with the two of them some weeks later, we spoke about the pressures disabled artists face to disclose their personal stories, the contradictory demands of “accessibility” in poetry, and how the literary world can build more accessible communities without requiring vast financial resources.

Liz Bowen (LB): Cyrée, when I saw you read at Performance Space, both you and the messaging of the event itself emphasized that, while this event was for disabled folks, we might not be talking about disability all the time. That’s part of a larger conversation in the disability world, about what disabled people are expected to perform in order to be legible.

I want to ask both of you about what being a disabled poet does or doesn’t mean for the work that you do and how you present that work.


Jesse Rice-Evans (JRE): I’ve been writing all my life, but my writing started to make much more sense as I was writing when I first got really sick, and that experience was illegible to the people I love. So, this whole book project, unlike a lot of other work that I’ve written, is very heavily focused on the body: my experience being in my body, as well as some of the emotions I experienced, like shame. I am non-agentic in my own body, just by virtue of literally not having access to things that I had in the past. And the process of coming to terms with that, with figuring out ways to redefine how my life is going to be, considering my new normal, is a big part of the book.

My politics have had to change so much in the past few years, as I’ve seen what ableism does to communities—the kinds of gatekeeping barriers that people are really invested in practicing under the auspices of rigor or community focus. It’s not a fucking community if you make it so that a ton of people can’t actually show up.

I don’t know how to write outside of that kind of thinking. And for me right now, centering access is important and that’s what I want.


Cyrée Jarelle Johnson (CJJ): So, I was diagnosed with autism spectrum disorder when I was five. Maybe four. And I got lupus when I was 14. I have been diagnosed with disabilities for more than half my life, at this point, so I don’t actually remember what it was like to not be disabled.

What’s most hard for me about writing about disability is that I feel, in some worlds, my disability narrative is the opposite of the disability narrative that I’m supposed to have. The classic narrative is: I used to be able to do this, now I can’t. Whereas, actually, I used to be able to do much less. I needed a lot more support.

I’m so grateful, because I was told that I couldn’t look forward to my 24th birthday. And I turned 30 this year. I never dreamed of having this kind of life. In fact, I feel like I fucked around for so much of my 20s because I just thought, This is all I get. You know what I mean? I’m thankful to lupus, in a way, for making me choose a profession. Because I’m very wild, I’m very pleasure seeking.


JRE: I’m turning 30 this year, too.


LB: Oh, my god. Congratulations.


JRE: And I also thought I was going to be dead way before this. But I always thought I was going to kill myself.


Design with Disability

By Mara Mills et al.

CJJ: Writing about lupus is like writing about ghosts. What do you say about something featureless? How can you really conceptualize it, except to talk about what kind of life you have to lead because you have it? And that is what I wrote about in the book. It is definitely about disability, but it’s about my disabled life, and what I had to do to stay alive.

Sometimes people are surprised that I don’t write directly about disability. But I feel like there’s a lot of focus on Black disability in my writing. To some extent, in the communities that I came from, disability only existed when you had literally ceased to be a person in their eyes. If you had what they considered the ability to work or contribute (both based on ableist metrics, of course), you were just ill—you had an ailment, a sickness, a difference.

My writing comes out of that pressure, that kind of silence, where—unless you were dropping dead, and then you’re, like, Sick Cousin So-and-So, and that’s like your first name—you were fine and you needed to shut up about it. And you know what? That’s the poetry.


LB: So, the work is defined by disabled survival even as it is not always explicitly about disability. How does this understanding affect how you present yourself to the poetry world? How can the poetry world support this kind of work and survival; or, put another way, what is the poetry world not doing to support it?


JRE: Take the event we were discussing earlier, “I Wanna Be with You Everywhere.”

That night, I was in a really awful pain flare, fatigue flare, depression flare. Two people that I love died this semester really close to one another. Two amazing women of color—just horrible. The event was not long after that.

My mom was visiting, and I wanted to bring her to the event. And I felt so fucking sick. I talked to my mom earlier. I was fainting a little bit. My mom said, “You look gray. Are you OK?” I felt like I was going to die. I didn’t know what to do.

We ended up going a little bit late, and I had a horrible headache, and they got me a comfy office chair and put me in the front row and gave me earplugs and showed me where the bathroom was and gave me a bottle of water.

And I’m sitting through Johanna Hedva’s piece, crying my fucking eyes out. And then I get up after they tell us to take a break, and I go pee in the accessible gender-neutral bathroom. I come back and Leah Lakshmi Piepzna-Samarasinha’s up next, and snot is coming out of my face, I’m sobbing so intensely.

And it was out of a joy: my body is not anybody’s inconvenience here. My body isn’t a problem. My body isn’t a thing that you’re going to hold against me. I’m telling you what I need, and you’re saying, OK. Instead of me saying what I need and folks saying: Let’s find a way to compromise what you need in order to make this doable for you.

That doesn’t happen ever. Academia is so fucking inaccessible, intentionally, and the poetry world is similarly so fucking inaccessible. I don’t get invited to do readings in New York: because I don’t go to anybody’s reading, because I’m physically unable to go to anybody’s readings. And I get that’s how people want to do community still—but it’s 2019. We have a fucking phone. Everybody has a phone. Just have a live stream of you in your bedroom. I don’t understand why we all have to physically go to this fucking place with a bunch of stairs and concrete floors and stools. It makes me crazy, and I can’t fucking physically do it. And that translates to me, allegedly, not caring about your event.

I fucking care. I fucking want to be there. It’s awful. And I don’t use a wheelchair, for example, I’m not blind—if it’s inaccessible for me, that means it’s inaccessible for pretty much everyone.


LB: What you’re saying is really true. There’s this perception that there are fewer resources for these DIY community events in the literary world. But what you’re saying, Jesse, is that this is not stuff that costs money. You can livestream on your phone.


CJJ: You could bring pillows from your home.


LB: I hear issues of what’s accessible to you and to your audience being sometimes in harmony, and sometimes not, right? Jesse, you’re talking about accessibility in the teaching world, and I know at your book launch, for instance, you talked about how you want your work to be accessible in the way that your teaching is. And so, it’s a central part of the way you do poetry.

Whereas, Cyrée, you’re talking about what’s inaccessible to you about your own experience, and yet there is a demand for exactly that kind of access from an audience that wants you to narrate your experience in a way that is legible to them.

Both of these threads relate to the question of what “accessibility” can or should mean in poetry. This is part of a broader debate in the poetry world about “accessibility,” where everyone seems to think they know what that means.


CJJ: In those conversations, “accessibility” often means accessible to some imagined, marginalized undercommons. That is often why people say my work is inaccessible. But when I’m around tenure-track poets, they say, Your work is too accessible. People can just pick this up and read it. They don’t have to read 85 other books to understand this one book. But when I go into other communities that I’m also a part of, like when I do the trans readings, people like my stuff. But I believe there’s some assumption that I’m too good to talk about things like T, or lupus or going to the rheumatologist. Whereas, these are traumatic medical experiences, and I would much rather talk to you about anything else. Anything.


Autism Aesthetics

By Michael Bérubé

JRE: Like a butterfly that I saw on the way here.


CJJ: Anything. Anything. I’d rather talk to you about anything other than the things that are literally the hardest and worst for me. But what you don’t talk about comes out anyway. It becomes everything.


JRE: People need you to perform your trauma. In admissions essays or grant applications, it’s very much about you having to figure out your audience. People who came from generations of wealth and privilege are going to be reading to see how much suffering you have been through, in order to make you valid enough for them to give you money for something. This is a very problematic space.


CJJ: They’re looking at you, saying, How much trauma have you experienced? But they’re also ranking you against others.


JRE: Whose trauma is worse.


CJJ: As a Black writer—but more than anything, as a trans writer and a gay person, I especially wonder: How can I even get authenticity among my community, when my community often doesn’t even think of me, or treat me, as authentic, purely by virtue of my existing? Truly, the autistic experience is about not easily knowing how to assimilate yourself into such situations. I don’t know what button to press to make people feel like they have something in common with me, even if they have a lot in common with me.

Especially since I was a poetry baby. I was dragged into poetry at five. Here I am on the other side of that. Even as a kid, I’d be like, What do they want to hear, what will make them see me?

So much of my experience with languages was, OK, what do I say to get them to see this like I see it. What do I have to do?


LB: Chronicity is hard for the able world. I feel like it’s the same people who are telling you that your work is too accessible that are demanding this kind of access to your interiority, which is totally impossible. But there’s just a whole world of meanings of “accessibility” that is not a part of that conversation at all.


CJJ: Sometimes I feel like writing is the worst art, because, if we all look at a portrait, we’re all literally seeing the same portrait. I might remember it differently, but people all see the same portrait. But I can say the same 25 words to you both and we’re all thinking different things.

I can’t make you see what I see. And that is the way I talk about disability. There’s an unspeakableness to it. I can’t actually tell you what it’s like.

LB: I want to turn to the question of access in the classroom, since you are both teachers. There are issues of writerly craft that come into teaching, but, also, the space of the classroom is often inaccessible. We don’t necessarily have much control over it.

But what do we make with these spaces? How can we intervene even in limited ways that maybe the institutions are not willing to organize themselves?


CJJ: Institutions are not meant to be accessible, and they will always exclude someone because they are exclusive.


LB: Yes.


JRE: Hard cosign on that as well. I teach first-year writing, which is a required class for pretty much every student starting university in the US. I’m very lucky: I get to hear students from an incredible array of cultural, social, and linguistic backgrounds. From them, I learn a lot about slang words and their ability to code-switch, because they’ve been successful in these institutional spaces for such a long time. And I’m very appreciative of all the wisdom that they bring with them.

In exchange, I also teach hybrid classes. We meet maybe one time a week, in person. I don’t take attendance even when we do meet. I don’t notice if you’re late. I give you a deadline, but I really don’t give a shit when you turn in your assignment. If you don’t turn it in at all, let’s talk about it. But I basically don’t give a shit about that either.

The subject that I teach has always functioned as a gatekeeping course. You have to pass first-year writing to take any other class. Anything. And I am not interested in creating more barriers for my students, the vast majority of whom are Black and brown, working-class and poor New Yorkers, many of whom are the first people in their family to go to college, all of whom have many responsibilities outside of my classroom. It is a deep injustice when instructors demand that students make their three-credit, hour-long class the only priority in their lives and shame them if they are unable to do that.

I’m writing an article about all of this right now, and it is a little scary to say it in an academic space, but: I don’t grade. Students grade themselves. I give them feedback. My only responsibility as a writing instructor is to do whatever I can to keep gatekeeping away from the spaces that I’m teaching in. That means digitizing a lot of shit, that means being really into forgiveness and empathy for my students and also for myself. If I’m too sick to teach an important class, I fucking cancel the class and there’s no extra work that the students have to do to make up for it.

There is nothing not rigorous about taking a day off, and there is nothing not rigorous about treating students as full people with difficult, complex lives that are impacted by our systems of oppression—systems that work really, really hard to make it impossible for them to succeed in the space where they meet me.


We Must Heal Each Other

By Liz Bowen

LB: I admire your pedagogy so much. What you’re modeling here is really a mode of engagement that almost completely fends off these situations that academia at large tends to be overly concerned about. You’re working against those objections that always come up when alternative pedagogies are brought up as possibilities. As soon as we talk about barriers to students learning, there’s always someone who says, Students are just trying to get out of work, or, How do we know they’re not just making stuff up?


JRE: I don’t give a fuck if they’re making it up.


LB: Exactly. But also, you’re creating an environment in which people are encouraged to be whatever kind of bodies they are and have whatever needs they have. There’s no reason to make anything up if you create an environment in which we’re all starting from a place of, Look, we are people with needs and we can tailor this classroom to be a place where you can succeed with whatever needs you have. There’s no reason your students are going to be lying to you.

This is a really basic shift of mentality: seeing your students as human beings in the world, who are all differently situated in the world.


JRE: When I was in college, I was deeply mentally ill and could not access any mental-health resources. I grew up in North Carolina, so basically, they’re saying, You should go to church, quit being such a slut. That kind of thing.


CJJ: Yeah. Those things are supposed to cure everything.


JRE: It didn’t ever register to anyone that I had illnesses. I didn’t quite flunk out of school, but I did really poorly in school and had to drop out. Something that would have helped a lot is having a teacher who treated me like a fucking person with complicated needs and emotions, both of which are impacting my ability to show up and be skilled and show off my abilities.

I just want to be the kind of teacher that I needed and try to not be such a racist scumbag, as a white person with a lot of authority over my brown and Black students.


LB: This whole conversation is about the work that we do, and the work that institutions do not do, to make possibilities available to our students that often weren’t available to us. Those of us who remain in academia have this ability to imagine what we would have wanted as students, as undergrads, and then enact those things.

It’s a miracle that you’re even able to do that, right? Most people are just excluded and don’t make it to where we all are right now. And that’s a combination of luck and perseverance and privilege.

My time in grad school has shown me how the inaccessibility of the institution pushes out the very people that are primed to think about these things.


CJJ: At the same time, it’s OK to decide that academia is not right for you. And I think that sometimes we overproblematize people who exit academia to do other things, because we overvalue academia.

LB: We’ve been doing a lot of talking about things that are confusing and hard. So, I want to get to my utopia question.


CJJ: Oh, great. I love utopia.


LB: We’ve brought up this event, “I Wanna Be with You Everywhere,” several times. And all the conversations I’ve had about this event were about: This shouldn’t be miraculous and transformative. And yet, it was miraculous and transformative to go into a space in which bodily needs were not just met (because it’s the law that they have to be met or because someone complained). Instead, the baseline of everything was: (A) we’re making this material as accessible as possible, and (B) accessibility is incorporated into the work itself.

There’s not this additive process, where we’re taking an art object and bringing stuff in to make it accessible to as wide a public as possible. Instead, there was a film that actively incorporated verbal description of the images; there was a musical performance that had an incredibly beautiful ASL interpretation, not just of the lyrics but of the music itself. I just have never seen such work in any kind of mainstream art or literary event before.

A lot of people are thinking about what we can take from that feeling of Wow, finally something is being seen and done here. I want to give you space to expand on that. What would your utopian literary world look like?


JRE: You know, after being at “I Wanna Be with You Everywhere,” I fought a lot harder for accessibility services at my book launch. And getting that and using the protocols that are in place at the Graduate Center was very hard. There’s a lot of outsourcing; people don’t actually have contact information for things, and there’s no funding for making it accessible, which I find really disgusting. I mean, there’s only one point person in student disability services. And she’s a full-time graduate student.


CJJ: Oh, goodness.


JRE: Yeah. So, we ended up being able to secure captioning, but we’re still working on who’s actually paying for that. At some point, I was looking at getting an ASL interpreter, but I would have to pay out of pocket. Both I and the person who helped me organize the event were befuddled by all the procedures of just getting basic accessibility protocols in place.

My co-organizer doesn’t identify as disabled, but it would be amazing if more people like her, who are paid a salary to do institutional work, practiced solidarity with people who have different identities or experiences from them. Knowing that they can use their access to try to make something into an accessible protocol that can be used long term.


Immigrants and Illness

By Kairos G. Llobrera

CJJ: Yeah. I loved “I Wanna Be with You Everywhere.” The expertise was evident in a very real way. And I thought a lot about what could be done to put more pressure on other places to do that. I think the only thing that we can do is stop going to inaccessible spaces and make them know that they’re inaccessible. Because if you’re inaccessible in ways that people might not notice, that have nothing to do with the ADA—like, for example, you don’t have enough seats at your party—you’re likely to not be accessible in any way. You know what I mean? And I feel like that’s the hard part.

I’m not someone who likes the term “chronic illness,” because I’m sick all the time. So, my symptoms come and go, and it’s like, When are they going to go? It would be great if they went. I have friends who are in remission. But I’m not expecting to be in remission in this lifetime.

But I do think that one thing that all of us could do is just resist going to inaccessible spaces. I see no reason why we should continue patronizing those places, especially as queer people. We just have to stop. Because queer glamour is actually a fetishization of celebrity, and celebrity will always exclude disabled people. It will tokenize some, maybe, but very few and only in very rare occasions. So, there’s actually something specific about our communities that makes spaces less accessible. Our first step is really to resist survival spaces that do not allow everyone to survive. icon

Featured image: Detail of Crouching Nude in Shoes and Black Stockings, Back View, by Egon Schiele (1912). Metropolitan Museum of Art