Or that I could even begin to consider myself Appalachian at all.
Everyone learns to play “Smoke on the Water” on a lap dulcimer to pass fifth grade. “Crick” and “crans” (“creek” and “crayons”) were just how you said it. Pittsburgh is the place only ever referred to as the city, and if you live there, as I do, that means you made it (out).
I’m from Mars. Pennsylvania, not the planet.
I’ve always said It would make more sense if it were the latter. I’ve always thought myself to be simply alien(ated).
I couldn’t read until I was seven. Everyone else could. Not me.
Numbers and letters might as well have been the same. I got by with sheer memorization of words or phrases. My parents required I read to them—my mother Goodnight Moon, my father Good Night, Gorilla. Slow speech curling from tongue & teeth in tandem with the drag of my mother & father’s fingers beneath sentence fragments. I stop when they stop. I start when they start.
Kindergarten had one Y2K Apple desktop & two CD-ROMs, Oregon TrailandWhere In The World Is Carmen Sandiego?, and the teachers instituted a two-book reading mandate in order to play. Games were the only thing motivating me through the drum of childhood.
I was strategic—I was sure to gun for the books when it was time to choose so I’d make it to the shelves first, select whichever we read during story time because they were fresh in my mind.
I performed for my teachers.
I took my time.
Dragging my pointer finger along the bottom of each sentence, lingering on the cliff of it, & I knew if they quizzed me, I’d be able to make them believe I read the two books required. I’d do anything to button mash my way from Paris to Minnesota to Australia searching for Carmen, or to risk dying of dysentery on the way to some new frontier home.
Anything but learn to read.
I’d have chosen to scour a pixelated world for pictures for images for clues as to what life was like for others who weren’t from Pennsylvania like I was. I wanted to know anyone who wasn’t like me. I learned young that who I was wasn’t someone I was supposed to like. I knew the world was kept from me, & I wanted to know.
I didn’t know the empowerment of words. I didn’t know books other than the Bible could send me to ethereal worlds not otherwise known.
My mother became so desperate for my literacy that she took me to the next town over to peruse the library’s shelves in the hopes I’d delve into a book beyond my disapproving look of the front and back cover. The library was the only place she didn’t censor me.
There I found books about betrayal and vengeance, secrets and alienation, love without adverse consequence.
There was where words became worlds.
There I became empowered to explore word-worlds and build my own world of words.
Halsey Hyer (they/them) is the author forthcoming full-length hybrid collection, Divorce Garter (Main Street Rag, 2024). Their microchapbook of micropoems, Everything Becomes Bananas (Rinky Dink Press, 2022), was nominated for a Pushcart Prize in 2023, and their debut chapbook, [deadname] (Anhinga Press, 2022), won the 2022 Rick Campbell Chapbook Prize. Based in Pittsburgh, PA they’re a collective member of The Big Idea Bookstore and the 2022-2024 Margaret L. Whitford Fellow in Chatham University’s MFA in Creative Writing. Find out more on their website—www.halseyhyer.org.
Following the release of our new e-anthology A Body You Talk To: An Anthology of Contemporary Disability our Editorial Intern Max Stone spoke with editor Tennison S. Black about the importance of sharing and amplifying work by disabled writers, their editorial vision for the anthology, the story behind the title, the inclusion of visual art in the collection, and more.
Max Stone: Could you talk about the title of the anthology? Why this title? Where did it come from and how do you see it unifying this collection of work?
Tennison S. Black: The thing about me that few realize is that I have to coach myself through chronic pain to complete basic tasks. Sometimes I’m really kind to myself, “Okay, here we go. You’ve got this.” And sometimes I’m irritable with the pain or outright inability to accomplish what I want, “Just do it. Oh for fu**’s sake.” But the thing is that I talk to my body all the time. Opening a car door requires a conversation in my mind, “Focus on the ring finger and let it do the work—don’t use the thumb—okay maybe just hook it then turn your shoulders and it’ll work as leverage.”
My primary disability seems hell-bent on taking out my hands, especially. Though I’ve had this disease since 2001, in recent years it’s increased the toll and I seem to be steadily losing my access to the use of my hands. So I talk to them a lot. But also to my knee, my left hip, my shoulders, neck, and spine. I guess it depends on the task but I coach my parts toward cooperation.
In the summer months there’s something about the way my bedroom door was originally hung and so when it swells in the heat, it’s really difficult to open. Every day is hard, but when you combine that with a flare in my hands, I can easily get stuck in my room because the doorknob and the strain of opening the door causes me extreme pain but also because I just can’t pull hard enough to get it to open anymore. At some level my instinct is to sit on the floor and have a good cry until I’m rescued. But no one is coming to rescue anyone else, it seems, and also, that’s not who I want to be in this life—I don’t want to give up. Except when I really really do. The way I bridge the difference is to talk to—I don’t know—the arm, the hand, the disease that puts me in that position, myself for eating something the night before that I know could cause me additional pain—all of it. The hot summer air and humidity that causes my door to do this. The inability to pay for someone to fix it—yes and yes and yes. So I have one of those bodies that you have to talk to just to get through the day. From opening a can or jar, yes even with tools, to carrying my bag, to pulling on my clothes, I need a coach so I coach myself. And in this way, I’m not alone.
MS: Why was it important to put together an anthology of poetry on contemporary disability at this current moment?
TSB: I haven’t always been good at saying I’m Disabled. It’s not in my nature to disclose my feelings or my struggles. There are a lot of reasons for this, but mostly I think it came from raising my kids as a single parent with no family or friends, and feeling utterly terrified that if anyone knew the amount of pain I was in on a daily basis, or how much I was struggling, I’d lose my kids. Now, that may seem irrational today, but I can’t overstate how alone I was in those years, and how I was just trying not to die. So it took a lot for me to even begin to understand my own disability, and what it may mean to be Disabled in the world, and also what to do with that information. I was trying to just get by, walking to food banks—got evicted, and on and on. Anyway, I’m not always great at it, and I struggle still, but I feel like I need to do better.
There’s not yet been a time when being Disabled wasn’t a radical act. Yet Disabled writers are still routinely excluded in many presses and open calls. Listen, there are several incredible anthologies of this type so we’re not breaking new ground here but until it’s routine and expected that a certain percentage of writers in every anthology are openly Disabled, we all (meaning presses) have work to do. As for Sundress, this won’t be our last effort toward this end, it’s just our most recent. But I still hear from publishers that Disabled writers are “difficult,” or that we “can’t handle touring and promotion,” and that we’re just “too much,” so we still have a long way to go.
MS: How do you see these poems contributing to the conversation on disability and creating more space and empathy for disabled people in the world?
TSB: Not all of the work in this anthology is about being Disabled except in as much as everything everyone does is influenced by their identity—Disabled and non-disabled alike. But this anthology is not necessarily intended to focus strictly on the experience of Disability as much as it’s intended to offer one more outlet, one more space for Disabled people to speak their minds or to place their art. It’s another marker saying that we’re here. In some cases these artists and writers are responding to other Disabled writers and artists. But in many cases they’re just representing themselves and saying hey, I want to be included in the conversation, please. And what else is there?
MS: Talk a little bit about your editorial vision for this book; what considerations did you make when choosing which poems to include? A variety of different voices, disabilities, intersecting identities, and poetic forms are represented; was this a conscious, deliberate choice that you made?
TSB: If I could have accepted every submission, I would have. But what was my vision—I mean here we sit in this world with fascism rising all around us, trying to gobble up and kill everything good. My daily vision is to defy that push, to offer space where people can be in love and in sorrow, in pain and in hope with each other. And to offer that space up to those who are living in defiance of all that is horrid and terrible in the world.
MS: Are there specific poems by different poets that you think speak to or resonate with each other? If so, which ones and how do they conversate, both in terms of content and form?
TSB: There are many pieces in this anthology that speak to one another. I’d prefer not to point them out because first I want the reader to have room here. But, too, I want every writer and artist herein to know that I value their work, none above any other, but with immense gratitude nonetheless for each. They’re all special to me and I chose them for that reason alone.
MS: The COVID-19 pandemic is a recurring theme in this anthology. Can you expand on the intersections of disability with the pandemic and the choices you made in selecting poems relating to the topic? Also, did you have an idea of how much of a presence you wanted the pandemic to have in the book going into it?
TSB: There hasn’t yet been enough said about the impact of the pandemic on our community. Personally, I spent the pandemic with a medically suppressed immune system because it was either that or lose my ability to walk as my disease ravaged my joints. And in fact, it took multiple specialists AND me losing my ability to walk for several months to finally agree to do it because of the pandemic. But my story is far from unique or extraordinary. If you faced the pandemic with a disability, you likely had increased pressure in all of the ways that everyone else had—just more so. From loneliness to financial pressure, to physical challenges and worries amid a potentially deadly pandemic to which many of us were more susceptible—especially to the worst outcomes. I didn’t feel that I could approach the topic of disability at this stage and not also talk about the impact of the pandemic—something many of us are still facing, even if most people have decided it’s over.
MS: Several art pieces are also included in the anthology. Can you speak about your thought process in choosing these pieces?
TSB: Honestly, if it weren’t for capitalism, we’d all be able to lay around and make art and write and tell stories. And I wouldn’t want to be a part of extricating one of these from another. Wherever my writing is, there will always be room for art. And I hope to include art in every editorial effort I undertake. My thoughts in the selection process here were to include pieces that spoke to or advanced the narrative of the whole and some of those were more visual than others.
MS: Disabilities that aren’t visible are often overlooked and ignored. How do you see A Body You Talk To tackling this issue and making such disabilities, and the people who experience them, more visible and acknowledged?
TSB: For twenty years I was invisibly Disabled. My disabilities have only become really visible in the last few years, and even then, they again can be invisible to those who don’t understand what they’re seeing. Like so many of us, I have been screamed at for parking in an accessible parking space, or for using the accessible stall in the restroom. I’ve been asked by a very prominent Disability rights advocate why I was there at a disability event and how they could know I was Disabled because I didn’t look disabled to them. It’s awful to be put in these positions so I just don’t think we need to justify ourselves. We don’t owe our medical information to anyone. It’s not really for me to make other Disabled people more visible but to offer them a platform to make themselves more visible (if they choose) is something I can do. And acknowledgement might be nice but what I want is universal accessibility. I want us all to be able to get in and out of buildings and to get around the world without so much difficulty or the need to justify ourselves to others. A Body You Talk To is a place for some Disabled writers and artists to be heard and to publish their work. That alone is, I hope, enough. It’s a room. The real work belongs to the writers and artists contained therein.
Tennison S. Black (they/she), a queer and multiply disabled autistic, is the author of Survival Strategies (winner of the National Poetry Series, UGA Press 2023). Their work has appeared or is forthcoming in SWWIM, Hotel Amerika, Booth, Wordgathering, and New Mobility, among others. They received an MFA at Arizona State University. They are the Managing Editor at Sundress Publications and Best of the Net. Though Sonoran born, they reside in Washington state.
Max Stone is a poet from Reno, Nevada. He has an MFA in poetry and a BA in English with a minor in Book Arts and Publication from the University of Nevada, Reno. He was born and raised in Reno, but has lived in various other places including New York City, where he played soccer at Queens College. He is the author of two chapbooks: Temporary Preparations (Bottlecap Press, June 2023) and The Bisexual Lighting Makes Everyone Beautiful (Ghost City Press, forthcoming July 2023). His work has been published by & Change, just femme and dandy, fifth wheel press, Bender Zine, Black Moon Magazine, The Meadow, Night Coffee Lit, and elsewhere.
The Sundress Academy for the Arts Workshop Series is proud to present “Dis/ability: A Writing Workshop.” Throughout history, disability has commonly been associated with restriction, pain, and fear. For many people, however, disabilities have also been a source of strength, empowerment, and creativity.
In this workshop, we’ll examine several pieces of writing that address disability from a variety of perspectives. Participants will have the opportunity to write in any genre, either to respond to one of the pieces or to generate original work around the topic.
Whether you are disabled yourself, have experienced a temporary disability in the past, care for someone with a disability, or simply want to deepen your empathy for people with physical, sensory, mental, or cognitive differences, this workshop will challenge you to think and write about the human body, its abilities, and its limitations in new ways.
The event will take place on Wednesday, September 9th, 2020, from 6:00-7:30 EST via Zoom. Join us at http://tiny.utk.edu/sundress with password safta.
This event is free and open to the public, although donations are encouraged via Venmo @Stacy-Estep or via Paypal (stacyjestep@gmail.com). Thanks to the Tennessee Arts Commission for making this event possible.
Stacy Estep is a fiction and nonfiction writer whose work has appeared in Atticus Review, bluemilk, and California Quarterly, among others. She has a background in indie publishing, web content creation, and public relations. For her fiction, she has been awarded a writing residency at the Vermont Studio Center. She lives in Knoxville, Tennessee, with her artist husband and two cats.
Jill Khoury is the author of Suites for the Modern Dancer, which was released this month from Sundress Publications.
Sundress: What is it about the body and disability that inspires your poetry?
Jill Khoury: From a young age my body was an object of the normalization efforts of others. At the same time, it was made clear that the body was a private thing. So I was told to be like the other kids, and be quiet while I was at it, and I internalized that message for a long time. So I do it because I was told not to. Nor are notions of normalization and privacy something that our society has moved beyond, so I guess I also write about these things because I want other people to tell their stories of difference and tell it loud.
Sundress: Did you ever read a work about either that really spoke to you? Anything you recommend?
Jill Khoury: So many! Here’s a brief list of books of poetry and memoir that have inspired me to think/re-think how I write about the body, in chronological order of when I discovered them:
Anne Sexton- Collected Works
Sharon Olds- Satan Says
Toi Derricotte- Captivity, also Tender
Stephen Kuusisto- Planet of the Blind, also Only Bread, Only Light
Georgina Kleege- Sight Unseen
Paul Guest- The Resurrection of the Body and the Ruin of the World
Tom Andrews- The Hemophiliac’s Motorcycle
Jim Ferris- The Hospital Poems
Ed. Jennifer Bartlett, Sheila Black, Michael Northen, – Beauty Is A Verb: The New Poetics of Disability
Danielle Pafunda- The Dead Girls Speak in Unison
Sundress: Your description of blindness throughout is very real. What’s your secret? How were you able to convey the experience of being blind in so few words?
Jill Khoury: My secret would be that I’m blind! Actually I’ve been trying to write elegantly about blindness for a long time, since college really, and I failed at it for many years. The (blind) memoirist and poet Stephen Kuusisto shaped a lot of my ability to write successfully about my own personal version of blindness. He taught creative nonfiction at Ohio State when I was pursuing my MFA there, and took several classes with him.
It turned out that I had to write about blindness in essay form first, before the poetry would come anywhere near to being how I wanted it. Although I don’t care for writing in prose too much, I needed a boundless space (which is usually what I don’t like about writing in prose) to give me enough room to explore the relationship with my blindness without the pressure to distill it into a poem. I really like the lyric essay. Steve introduced me to that form. It was just what I needed.
Sundress: In this book you write several poems about characters who are children or young adults. Do you think children have a special awareness of the body and the stigmas attached that older adults may miss?
Jill Khoury: Like I mentioned, I was taught in early childhood to not like my body and its differences. I spent most of my time after age 18 unlearning those things. I do think children are aware of their bodies with an innocence and a freedom that is so easily quashed by adults. The stigmas are learned very early, and internalized by all bodies. To say that I found the received stigmas about my body inhibiting would be an understatement.
Sundress: Have you ever written a poem that you felt you just couldn’t get right? What’s your revision process like?
Jill Khoury: The title poem of the book, “Suites for the Modern Dancer,” was started in, I think, 2004. I wrote the final draft of it about two months before Suites-the-book was published. An earlier version of the poem appeared my 2009 chapbook, Borrowed Bodies, but it still was not complete, not nuanced enough to accurately convey the complex fluidity between blindness and seeing, and the consequences of, as mentioned in the previous question, received stigmas about the body.
My revision process is different depending on the poem. “Suites” was sparked by reading A. R. Ammons’ essay “A Poem Is A Walk,” in which he said:
“The motion may be lumbering, clipped, wavering, tripping, mechanical, dance-like, awkward, staggering, slow, etc. But the motion occurs only in the body of the walker or in the body of the words. . . . It can’t be translated into another body. There is only one way to know it and that is to enter into it.”
All my life I had struggled with walking. I went to a school for kids with cerebral palsy when I was very young to improve on some coordination issues that I was born with. As far as I know, I don’t have CP, but I do have issues with balance and motor control that seem similar to people with mild versions of CP.
I lived in one of those small towns where you go to elementary and middle school with the same kids that you graduate high school with. I would say I did not have a “normal” looking gait until I was somewhere in the elementary school years. That, along with my low vision, was grand fodder for childhood cruelty, and somewhat, for cruelty from teachers who really wanted to normalize me. Again, received stigmas.
It may have been the case that the professor who assigned the Ammons essay, also gave us an assignment to think or write about poetry and walking—I can’t remember now. But I thought a lot about the history of my walking and of my newly acquired walk, the one with the white cane I had recently learned how to use in order to forge across the wide midwestern streets of Columbus, Ohio. The cane gave me much better balance and bodily confidence, but I also felt like that girl who was learning how to walk being pointed at by all the mean kids, only everyone was grown.
Sundress: What’s interesting about these poems is that some have a more traditional format and structure while others don’t. Do you ever find yourself leaning toward one or the other or does it always depend on the poem?
Jill Khoury: The poem determines itself. They each emerge organically. I wish I had a more adroit answer for this question, but it really is based on an intuitive feeling of sound and breath and the emotional timbre of the subject matter.
Sundress: What progress do you think still needs to be made for disability representation in poetry and literature?
Jill Khoury: A lot of progress still needs to be made. Last year I heard an editor of a young, vibrant press that publishes “edgy” work and has been inclusive of other work based in identity, a place that I might submit my work to otherwise, say “I hate hospital poems [or poems that dwell on the body and its illness] because they are such a downer.” I was stunned. It was a comment you might expect to hear from a traditional “old guard” sort of press that had very particular ideas about what poems should and shouldn’t be about, but that wasn’t this.
With that in mind:
More journals and presses should be open to examinations of disability and the body as another facet of identity, much like has (recently) been given to examinations of the complexities of gender and race, for example.
Space should be given to works that focus on intersections between facets of identity, such as race, sexuality, and disability.
The personal narrative should be emphasized–meaning: more space for disabled voices writing about disability and much less space being granted to disability used as a prop, trope, or conflict to give more “depth” to a nondisabled person’s narrative fiction.
Jill Khoury is interested in the intersection of poetry, visual art, representations of gender, and disability. She is a Western Pennsylvania Writing Project fellow and has taught writing and literature in high school, university, and enrichment environments. She holds an MFA from The Ohio State University. Her poems have appeared or are forthcoming in numerous journals, including Arsenic Lobster, Copper Nickel, Inter|rupture, and Portland Review. She has also been anthologized in Women Write Resistance: Poets Resist Gender Violence, Pudding House Press released her chapbook, Borrowed Bodies, in 2009. Her debut full-length collection, Suites for the Modern Dancer was released by Sundress Publications this month.
