On Saturday, January 21, 2017, I discovered that my body is not made for protest marches. Since the election and the ensuing rhetoric coming from the White House—which feels like a negation of all the progress made toward a society that seeks to understand and integrate the experiences of marginalized women—everyone I know wants to up their activism game in small and large ways. I also felt the urge to do more. One way I thought that I could move beyond my comfort zone, beyond my life that is circumscribed by various disabilities, was to march.
I attended an intersectional feminism march in Pittsburgh. I wanted my body to add to the disabled presence, and to feel a part of something greater. Beyond my blindness, I was worried that fibromyalgia and severe anxiety would affect my ability to march. It was awkward to march in a crowd with the white cane, but I managed. At first I was so pleased that, with a back brace, I could stand and march for over two hours. But the next day I had extremely painful back spasms that left me struggling to get around the house and perform everyday tasks. How many marches will be in my future? I don’t know. After this march, I became grudgingly aware that my disabled activism might have to be different than the activism of able bodies, and also other disabled bodies. I talked to some friends about it. One of them said, “but activism is already a part of your life’s work. Maybe you need to honor your limits.” “Honoring my limits” is a phrase to which I have always had an ambivalent relationship. After some consideration, I agreed with her, and eased off the self-berating to concentrate on where I could best put my own energies and expertise.
I run a literary journal called Rogue Agent. In its mission statement, I invite people to tell the stories of their bodies, specifically marginalized bodies constantly in danger of being erased. “If our bodies are oppressed by an outside force, we are ‘written over.’ Rogue Agent wants to retaliate.” Besides featuring work that interrogates and investigates gender, race, and other facets of identity, Rogue Agent is one of a handful of journals that specifically welcomes work from the disability community. As such, I was recently invited to present on a panel at the 2016 Associated Writing Programs Conference called “Not Invisible: Editors of Literary Journals Speak Out on Disability and Building Inclusive Writing Communities.”
The tiniest seed of an idea for Rogue Agent germinated in my mind three years ago when I was being interviewed about the poetry of disability for a radio program. I was talking about the Beauty is a Verb anthology of disability poetry that had recently come out. The interviewer asked me a question that caught me off guard. She asked if I was worried this anthology “ghetto-ized” disability poetry. She clarified: if, by placing the word “disability” in front of the word poetry, does it relegate the poems to a place where no one would want to read them? It made me think very personally about the larger world’s rejection of the disabled experience.
In its most recent survey, which collected self-reported demographic data, VIDA enumerated this rejection. From the fifteen publications VIDA surveyed, six did not publish any women with disabilities at all over the course of the previous year.
Returning to the subject of the radio interview, there were a number of assumptions behind the interviewer’s question that I did not agree with. But most importantly, I believe one person’s ghetto is another person’s safe space. I did not begin my career as a poet by writing about my own body and my disabilities. When I did start, it was scary and daunting. My material was vulnerable, and more honest than anything I had written previously. I sent these disability-themed poems only to magazines like Breath & Shadow and Wordgathering—places where I knew that the editors already respected poetry that talked so frankly about the body and bodily impairment, and would not pass on them simply because of the subject matter. To me, these journals are safe spaces, edited specifically to showcase the poetry of disability, by people who are sensitive to the exposure that authors risk when writing and submitting work about the body. They are extremely valuable to emerging writers who worry about disrespect and want a place to “try out” what it feels like to send vulnerable work into the world.
But did sending my poetry only to these “safe” venues limit my readership opportunities? The interviewer’s question nagged at me long after the show had been broadcasted. I was enraged and provoked. I wanted to find my own answer to this tension between staying within a safe space and making inroads into the larger world. I remembered how my heart was pounding the first time I sent disability poems to magazines that covered any and all subjects, and how I questioned the first rejection from such a magazine. Had the poem been rejected because of its subject matter? I would never truly know.
Newly attentive to the reception surrounding “body poetry,” I began collecting anecdotal evidence of the circumstances in which people labeled it as taboo. One editor said on Facebook, regarding a press’s chapbook contest, “please no poems about hospitals or illnesses because those are such a bummer.” A woman in the audience at a panel on feminist poetry asked, “Hasn’t feminism moved beyond needing to constantly talk about the body?” A female friend confided to me that a male mentor at a writing conference told her that her poems about illness were not legitimate material for a manuscript.
In her introduction to the 2015 VIDA Count, “The Year of Intersectional Thinking,” Amy King writes, “If certain women’s voices are absent or poorly represented in mainstream publications, how does that deficit shape public thought? What are implications on the public imagination, if any? Do stereotypes take the place of lived women’s thoughts, ideas and experiences? [….] Isn’t one of literature’s effects to humanize populations beyond our own?”
In the fall of 2014, I was pondering something akin to King’s sentiments, but my ideas were nascent and not fully formed. I was frustrated with my own feelings of anxiety toward the publishing of my disability-themed work. During this year also, I was struggling with using my white cane 24/7. As a child, I had been mainstreamed because experts thought that if I learned to use my residual vision in an effective way, it should be enough to allow me to move through the world safely. My parents were of the mindset that promoting the idea that I was “like any other child” and “could do anything I set my mind to” was the healthiest approach to raising me. I only started to use a cane when I began graduate school, and I was unused to the harassment it brought from strangers. Since then, I continually had tried to make the cane a permanent fixture when I was out travelling, but it was hard. I also had to pick around the minefields of anxiety and PTSD. I mostly carried the cane in my bag, fully aware of the irony. Woman on the street with white cane = blind. Based on each observer’s assumptions of me, this brought a different type of interaction than woman-on-the-street with no outward signifiers of disability.
Disability—the representations and actualities of— was in the forefront of my mind that year. My experiences wrestling with passing or not passing also made me think about privilege along the axes of race, gender, disability, and class—the ways in which I had privilege, and the ways in which I did not. I was beginning to understand that, for example, a trans woman of color using a wheelchair on her way to the grocery store would elicit a different set of assumptions and interpersonal contact than I would. It made me feel angry, sad, fearful, and curious.
Doing literary research, I became excited by journals like MUZZLE, which says in its mission statement, “Institutionalized hate, discrimination, exploitation, rape, violence, tangible and intangible theft, and other abuses of power are older than this country. We are seeking new answers to old questions and old answers to new questions.” And Lunch Ticket, who says their magazine “strives to balance cutting edge literary and visual art with conversations about social justice and community activism.” I wondered what my activism could look like.
Someone told me after a reading that I used “visceral language,” and I realized that all the poetry I liked used this type of language —words unafraid to examine the embodied nature of identity in detail. I remained fixated on this concept of “bodies.” How in some ways, I knew this terrain best and in other ways, the ways of women who were marginalized differently than I was, I had no knowledge at all. I started reading only poetry about the body.
In the winter of 2015, I turned 40. At the same time, two classes that I was supposed to teach that semester got cancelled. I had a real… moment of contemplation. I noticed embodied poetry sprinkled throughout journals. I wondered if other people would want a platform that existed exclusively to question or celebrate the journeys of living in their bodies. I decided I would start a journal, and like all the poetry I now loved, the poetry contained within this journal would use “visceral,” risky language, and answer the question, over and over, “what is it like to live in this body?”
It its two years of existence, Rogue Agent has had the honor to publish poetry where identities intersect. It is what I had hoped would happen, and I am grateful every day to be a witness to our authors’ work. Intersectionality transcends the limits of identity categories, while appreciating the way a multitude of identities creates a particular body. Each poem is an extension of its author’s body, its joys and struggles.
One struggle that people with disabilities face is barriers to access. These barriers happen on both the production side (writing, editing, and publishing) and the reading side. In addition to the economic barrier, the disabled body— with its mobility, vision, memory, or focus problems— faces greater fundamental challenges to revision and submission than people without disabilities.
When reading poetry, the medium itself becomes the challenge, which is why Rogue Agent is an online journal and not in print. When I was an undergrad and graduate student, online journals were still gaining in credibility. Print journals did not necessarily feel it was important to provide an online presence. Even when gifted with well-appointed libraries on convenient bus lines, it was difficult to track down recent issues of print journals I wanted. Journals that did not belong to the “Tier 1” category were nearly impossible to find. Of course, I could subscribe or send away for back issues, but living on a grad student teaching stipend meant I would have to choose between a journal subscription and groceries.
Since I graduated, offering online content has become nearly ubiquitous, tremendously lessening the time, effort, and money I have to spend to access poetry. Computer operating systems and even phones have built more features to aid accessibility. Although I don’t use a screen-reader for poetry, my computer can read me the essays, articles, and stories from online journals with a few keystrokes. To me, journals that appear only in print, with no online content, connote a restrictiveness that feels a little like you are not wanted here.
Rogue Agent celebrated its two-year anniversary on April 1. It is my goal in this coming year to pursue additional accessibility options, including implementing audio for the poems. Not having a good example for how to implement accessibility options while still maintaining the design of my journal, I was so fortunate to recently stumble upon Deaf Poets Society. This journal, which features material by people with all types of disability, is to me, a new model for accessibility, while maintaining a sleek aesthetic.
Writing about the formation of Rogue Agent and the genesis of my own disability poetry feels incomplete without including the words of my co-editor, Jen Stein, without whom I couldn’t undertake the many responsibilities of Rogue Agent. Jen became part of the Rogue Agent community first as an author, so she has a unique perspective. When I asked her how she perceived Rogue Agent to be a journal that advocates for writers with disabilities, she wrote:
Part of why Rogue Agent is so critical, is that bodies are displayed in all their candor, their grace and beauty. It goes beyond a mirror for the poet – it’s a place where the body can be told as a story in its own right ….. To me, it removes the “othered” feeling that disability can cause, and as a poet, it helps me feel that my work regarding disability is not only respected, but a valued part of a community.
I feel simultaneously humble and proud to think that I was able to turn my jumble of thoughts and “potential energy” into a venue where Jen could feel heard and understood, and that, working together, that we can do the same for many other authors and artists.
As the Trump administration continues to show its denigration of marginalized individuals, maintaining our activism is all the more important. In fact, saying that is an understatement. I want to jump up on the table and scream activism is all the more important. What I didn’t know when I started, rather awkwardly, to write about my body, is that embodied writing is a form of activism. It keeps identity in the forefront; it doesn’t shy away from uncomfortable images and themes, and it allows others a window into the author’s lived experience—necessary to continue the trajectory toward greater understanding of people different from ourselves, which builds a more inclusive feminism. I encourage you, if you don’t already engage in embodied writing, put pen to paper or start hitting those keys. It could be your new activism.
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 teaches workshops focusing on writing the body. She holds an MFA from The Ohio State University, and edits Rogue Agent, a journal of embodied poetry and art. Her poems have appeared or are forthcoming in numerous journals, including Copper Nickel, Bone Bouquet, Lunch Ticket, and diode. She has written two chapbooks—Borrowed Bodies (Pudding House, 2009) and Chance Operations (Paper Nautilus, 2016). Her debut full-length collection, Suites for the Modern Dancer, was released in 2016 from Sundress Publications. Find her at jillkhoury.com.