January 24, 2018 § 8 Comments
By Rachel Hoge
Sometimes I have trouble knowing which came first: my writing or my speech disability. I began stuttering early in life, around four or five years old. Around this time, I wrote my first poem—one short stanza about ducks, but don’t judge, I was learning. One thing I never learned, though, was how to stop stuttering. Like 1% of the American population, stuttering was the neurological and genetic hand I had been dealt. I continued to write, mostly because it was a form of communication and self-expression that was inaccessible to me verbally. I never stopped writing and I never stopped stuttering, and both became significant and lifelong conditions.
In the beginning, I wrote poetry and fiction exclusively, but in my early 20s, once I began to write about my speech disability, I naturally gravitated towards creative nonfiction. I found creative nonfiction could best accentuate the complexity of being disabled: in this genre, I could be both candid and literary, perceptive and forthright. When it came to writing about disability, the personal essay proved to be a perfect fit.
I’ve written at least forty personal essays about my stutter, and have published about half of them. I’ve found there are three craft elements in creative nonfiction that are essential to the disability essay. Without them, I wrote many flawed and unfinished essays.
The first element is scene writing. The use of scene is common in creative nonfiction, but is especially effective in the disability essay. Catherine Kudlick, for example, opens her essay, “The Price of ‘Disability Denial,’” with an immediate scene: the year is 1989, and Kudlick has a visual impairment called nystagmus; as a result, she avoids speaking to large audiences. Then a colleague suddenly reveals to her in-scene that her job security hinges around giving a lecture to 100 students. The reader is instantly panicked, and because this revelation is explored in-scene, the conflict of Kudlick’s disability becomes much more accessible.
Scenes are used to transport the able-bodied reader into an experience they’ve never previously felt or imagined. And because scenes differ from summary—reliving one specific moment in time —the singularity of such a scene allows the reader to fully inhabit an unknown circumstance. Readers can imagine themselves in place of the narrator, or at the very least, can sympathize and comprehend the situation better than before. Scene writing in the disability genre permits the narrator to reveal the uncommon nature of living with their condition. Through scenes, the able-bodied reader begins to understand how everyday activities or common interactions can become difficult or frightening when experienced through disability.
Next, we have research. The integration of facts in disability writing is natural and necessary. It is, after all, writers of disability who must challenge misconceptions and social stigmas surrounding their very identities…while simultaneously crafting scenes, characterization, and assembling a narrative arc. If the disabled writer’s objective is to provide more than a surface-level understanding of disability—for example, if they wish to expand a reader’s understanding, or prevent the spread of misinformation—then the use of research becomes an essential tool in disability writing. Research can also be used to highlight an experience that able-bodied readers are unaware of, like Britney Wilson’s essay “On NYC’s Paratransit, Fighting for Safety, Respect, and Human Dignity,” which examines Access-a-Ride, New York City’s paratransit service that—as a native New Yorker with Cerebral Palsy—Wilson has used for decades.
It should also be mentioned that research provides disability writing with layers it desperately requires, such as context and credibility. Without an understanding of what disability is and how it’s perceived by others, the emotional arc laid out by the narrator would lose significant impact. It’s an unfortunate truth, but one worth relaying: a writer’s first-hand account of disability will always be challenged, but a first-hand account supported by evidence won’t be as easily silenced. Personal experience isn’t enough for most abled-bodied readers because they have their own unconscious portrait of disability—often inspirational or destitute, with no room for complexity or nuance—and that stereotyping needs dismantling. The inclusion of research allows writers of disability to develop a platform of authority, and once on that platform—they can finally share their story.
But perhaps the most powerful craft element of disability writing is reflection. Creative nonfiction writers must have a clear perspective in order to impart a tangible concept, meaning, or epiphany, to the readers. This is even more vital in the disability essay, as a narrator’s introspection on their condition must resonate beyond their own observations. Without commentary from an insightful narrator, the piece becomes a compilation of memory that offers little to no meaning. The retrospective thinking of the disabled narrator must include a larger context for the essay to maintain relevance, like a push against societal norms or expectations, an exploration of body image, or an internal search for self-acceptance.
To explain it another way: an incomplete essay simply reveals the life of a disabled person; a complete essay reveals the life of a disabled person, while offering a new viewpoint or meaningful context. Reflection can provide a more intricate understanding of disability, informing readers and offering wisdom through the narrator’s contemplations. Reflection can overt, like in Meredith Bland’s “All Bodies Count” where she writes about her complicated relationship with her disabled body. Reflection can also be subtle and reserved, like Rebecca Swanson’s contemplation of Tourette’s syndrome in “The Fine Lines of Twitching.” Both approaches show the private perceptions of people with disabilities, and how these perceptions challenge readers to consider a perspective unlike their own.
Still, you might ask: are these the only craft elements significant to the disability essay? Of course not. I encourage writers of disability to embrace the personal essay in whatever way they can. If a disability essay lacks scene writing, research, or reflection, does that mean it’s unaccomplished? Not necessarily.
But do keep in mind: without craft, readers will impose their own understanding of disability onto the essay, and that understanding may be incorrect. And even with craft, readers may misinterpret your meaning. But the danger of not applying—at least some—craft elements to the disability essay, is that society’s depiction of disability will likely go unaltered. Providing the reader with an authentic understanding of disability, and pushing beyond flat portrayals to deliver a more complicated portrait, allows those of us with disabilities to shed light on the misinterpretations of our identities.
To me, there’s nothing more important.
Rachel Hoge is a freelance writer, essayist, and recent MFA graduate from the Arkansas Writers Program. Her work has appeared in the Washington Post, Salon, the Rumpus, and many more. Lately, she’s been hard at work on her debut essay collection about the intersection of disability and gender. You can follow her on Twitter @hoge_rachel or view her full creative portfolio at https://www.rachelbhoge.com.
July 14, 2017 § 12 Comments
By Emily K. Michael
Submission guidelines rarely make me angry. Because I seek publications that share my interests – ecology, feminism, disability, music – all the specifications can start to look the same. Most journals want a well-rounded submission, free from religious agendas, offensive stereotypes, and one-dimensional fables of inspiration.
When I find a publication that seems promising, I scroll through the journal’s “About” page and submission guidelines. Here’s where I can make some serious assessments. Journals lose my interest if they proclaim, “send us your best work” or “we only publish good poetry.” I won’t let my students use “good” and “bad” as standalone terms, so I hesitate to send my work to a journal that won’t express its own agenda in more vibrant language.
Among publications that promote the work of disabled writers, the guidelines evince a similar aesthetic. Here are excerpts from three journals committed to sharing the work of writers with disabilities:
“Writers with disabilities can submit poems on any topic. For topics unrelated to disability, [The Journal] will ask you to confirm that you have a disability upon acceptance. Non-disabled writers must submit work that relates in some way to disability.”
“Submissions may be either by an individual with a disability or anyone who is part of the community.”
“[The Journal] is a forum for people with disabilities to speak for ourselves. We hope that our allies will support this endeavor.”
These guidelines echo the common thread among disability-related publications: work by writers with disabilities or work about disability. While some journals open submissions to friends, caregivers, and other allies, others only want work by disabled people – presumably for a disabled audience.
The style of the guidelines matters. With lists of fussy rules and blocks of prescriptive reminders, a journal seems overbearing. When I answered a recent call for blind writers, the editor wrote to me, “Make sure to use plenty of vivid details.” I felt like a freshman in a creative writing class.
But perhaps I should have expected this kind of micromanagement. The guidelines for his publication read: “We want to hear first-person stories not merely about blindness, but about what it takes to survive and strive as a human. We want to establish a new venue for exploring direct experiences surrounding the often misunderstood and under-appreciated aspects of blindness.”
What fascinates me here are two concepts: striving “as a human” and “the under-appreciated aspects of blindness.” These phrases sound subtle alarms. Even before this editor reads my submission, I must prove myself “as a human.” This is a journal that wants human stories, not more-than-human, not nonhuman. It’s a journal devoted to personhood.
The “under-appreciated aspects of blindness” are the compensatory gifts of disability, cleverly disguised. In their very next paragraph, the guidelines instruct the writer: “The most important thing is that [the submission is] honest, unafraid, and rooted in an experience of visual impairment.” I put this line in conversation with the editor’s advice to “avoid talking about your diagnosis and focus on the experience.”
The editor wants blindness, but not my blindness. While I support the journal’s efforts to cast disabled people as more than their diagnoses, I don’t appreciate the reminders. If I choose to focus on medical details, that choice is not a shortcoming or a sign of my ignorance: it’s a rhetorical move with desired effects.
These guidelines are a reaction to a powerful threat hibernating in the presence of disabled artists – that we might dare to speak of our experiences without courage, that we might offer the nondisabled reader a few lines of fragmented, unpredictable reality. Against this threat, the guidelines erect new definitions: Our reality is now unreality. They won’t acknowledge our experiences or publish our work.
They want clean lines.
But the desire for clean, polished renderings of disability is not confined to nondisabled readers – who receive plenty of blame for the bad attitudes we face each day. On another call for disabled poets, posted to social media, a writer asked, “What kind of poetry are you looking for?” And the editor offered a fabulous phrase:
“I don’t want microaggressions. I want good poetry.”
Now I know what the editor means: she doesn’t want poetry that whines or complains, poetry that fusses over the little irritations of each day. She wants something more than a poet’s note to herself – poems that would resonate with readers beyond the original writer.
But this statement erects a binary between “microaggressions” and “good poetry.” It’s as if the editor is not just critiquing submissions, but the inspiration for those submissions. As I look through my work, I should censor myself, interrogate each poem for a suitably elevated motivation. In forming the “good poetry” or the “courageous” depiction of vision loss required by these editors, I am supposed to rise above the everyday irritations of disability, distill my experiences into a fine, sparkling elixir.
In their syntax, these guidelines divide me from my sense of how writing transforms my experiences. I can summon up my exhaustion at the end of a long day of intrusive questions, my frustration with the pity of strangers who don’t bother to understand me, my loneliness and longing for other blind companions. The process of art may transform these feelings into something grander, something more transcendent. And it may not. Art begins with our mundanity.
As with the language of compensatory blessings, the editors avoid the word “inspiration.” Perhaps they know that we’ve gotten hip to its real meaning. We recognize inspiration – the kind expected from stories of overcoming – as code for erasure.
But the unsuspecting blind writer can face other signs of erasure out in the open. A website called TheReImage offers a seemingly noble mission: “TheReImage will share stories focusing on all aspects of life. Each story will feature individuals with different degrees of vision loss, but rather than concentrating on that one aspect, we’re examining the emotions, feelings and experiences we share as humans.” Here is a website dedicated to stories of our shared humanity – doesn’t that sound wonderful? Finally, a publication that acknowledges disabled writers as people!
Again I see “as humans.” I am on edge.
In their submission guidelines, I find that stories should: “Provide a well balanced authentic perspective on living with vision loss. Focus the story on the human experience, not the vision loss. Promote public awareness and greater understanding of vision loss and the capabilities of people with vision loss. Be of interest to the sighted/general public.”
These guidelines hide a sinister contradiction. They encourage writers to offer a balanced, authentic perspective of “vision loss,” and they contrast this brand of authenticity with a “focus on vision loss.” So a story that focuses on disability, that explores some medical or anatomical concept, is therefore deemed inauthentic and unbalanced. Further down the page, The ReImage tells writers to, “Use the term ‘vision loss’ instead of blind or visually impaired,” and “Put the vision loss aspect in the background.”
Perhaps the most heartbreaking feature of these guidelines is the mandate: “Be of interest to the sighted/general public.” TheReImage wants to promote better stories of blindness, but not for a blind audience. They’re rallying against that dark threat again – the notion that we might dream of offering our own experiences, unfiltered through inspiration or courage. And they’re not just circumventing our stories, they’re actually renaming us.
Even though I have dozens of delightful experiences, I can’t write for TheReImage. I am resolutely a blind poet. Not a “writer with sight loss.”
These guidelines tell half a story, and it’s the half that many people want to hear. TheReImage claims to be giving us back our personhood – offering stories where the disability doesn’t overshadow the humanity. But in order to give us membership in their tribe, they must acknowledge that someone has taken it away. You can’t return a stolen vase if it hasn’t been stolen. So disability itself becomes the thief, and they conquer it with style.
TheReImage asks for balance and authenticity, yet it banishes the self-identified blind or visually impaired writer, forcing them to go by another name. What is authentic about having to rename oneself for a “general/sighted public”?
These guidelines are not designed for my questions. They are not drafts but finalized decrees. I can’t place my trust in a one-sided conversation.
Editors, I am looking for dialogue, a mutual coming-to-terms. I am looking for textual empathy.
I have seen such empathy unfold in real time. In 2015, I responded to a call for women writers. The editors were creating a feminist anthology and seeking diverse and “differently abled” women. Because the project looked interesting, I told the editor that “differently abled” wasn’t a term that I as a disabled woman would choose for myself. I explained that disability wasn’t a dirty word and asked if she would include it in the call for submissions.
To my surprise, the editor immediately altered the language of the call and confessed her desire to use the appropriate term. She said, “It’s hard to know what’s preferred unless you’re in the group,” and I agreed. Ours was a brief exchange, a handful of comments and links shared on Facebook, but it represented a commitment to dialogue.
This commitment to negotiation is what’s missing from so many of the off-putting calls for disabled writers. An editor or panel of editors decrees what “version” of disability I am allowed to submit, and if I don’t comply, they’ll move on to a whole queue of submissions willing to barter for personhood on someone else’s terms.
Emily K. Michael is a blind poet, musician, and writing instructor from Jacksonville, FL. Her poetry and essays have appeared in Wordgathering, The Hopper, Artemis Journal, The Deaf Poets Society, Nine Mile Magazine, Disability Rhetoric, Narrative Inquiry in Bioethics, BREVITY’s Nonfiction Blog, AWP Writer’s Notebook, and Barriers and Belonging: Personal Narratives of Disability. Emily’s work centers on the themes of ecology, disability, feminism, and music. Find her at her blog On the Blink, and watch her TEDx Talk, “The Confluence of Disability and Imagination.”
May 22, 2017 § 16 Comments
By Sonya Huber
The typical literary reading presents an obstacle course for many people with disabilities and chronic illnesses. From finding transportation and parking to staying up late to navigating stairs and chairs, every decision involves stress and difficulty. My recent essay collection, Pain Woman Takes Your Keys and Other Essays From a Nervous System, deals with the twists and turns of living with chronic pain, and I knew that I needed to find ways to connect with people with chronic pain. I was surprised to find that an online reading was easy and fun, and I believe this is something other authors can easily do to extend their own audiences and make literary readings more accessible.
My first foray into online readings was through a Facebook Live Event. I hadn’t seen this done before so I kind of winged it, and in the end I think it turned out very well. I know that I will hardly ever in my life have 345 people watching me read at a bookstore, so even though I couldn’t see their faces, I could see little hearts and thumbs-up icons floating past the screen along with comments as I read. And within a few days after the reading, the video had been viewed over 1,200 times—a number that warms any creative writer’s heart. I believe that jumping into online “broadcast” can help to get ourselves out there and share our work with wider audiences, so here’s how I did it:
- Choose your platform. My options were Facebook or YouTube, and I chose Facebook because I have more contact with friends and followers there, but I think there are arguments for both platforms. The one argument against Instagram as a live video service is that it does not support captioning.
- I picked a day and time to host the “live” event and made a Facebook event for the reading. Since the reading was going to be on my personal page, I put a link to my personal page on the event itself along with information about what I would be reading from. I chose an afternoon time on a weekend because some groups of people with disabilities and chronic illness have their best energy before evening, so late events are usually not ideal.
- I worried that no one would come and that I was going to pioneer a new kind of bad idea on live video. I was grouchy with anticipatory embarrassment.
- I investigated how to caption a video and whether I could download this video. I learned that it seems complicated at first but then, once you become comfortable, it’s very possible and even easy. Captioning is important to allow access to people who want to engage with the reading but who are d/Deaf. Captioned video often comes with a separate text file called a SubRip or “srt” file, and I briefly dove into learning about that but then I learned that for basic applications like this, it’s not necessary to understand.
- I ran a test “live video” reading that was about half a minute on my Facebook profile so I could play around with the file (first learning that I couldn’t go live because of some browser preference, so that was good to know). After fixing my browser, I recorded a bit of me talking live by pressing the “Go Live” button. I learned that by clicking on the video itself so that it was the only thing on my screen, and then clicking the three dots in the upper right of the video, I could download the file as an mp4. Great! I also learned through extensive Googling that Facebook offers a new valuable service in which videos published to a Page (not a personal profile) would have an option to use automatic voice-recognition captioning. Yay! I have an author page, so I figured I’d upload the file and use the captioning in the Page itself to caption the video.
- I uploaded my “test” file (about 30 seconds of me talking) to my page. After I hit “Publish,” and the thing was uploaded and processed, I had the option to go back and “edit” the post. When I hit “edit,” there was a “captions” option that included a button to “Generate.” (I paused for a bit of joy because I was so excited.) I hit the button, and YES! Captions! I scrolled through and edited the captions where Facebook interpreted by nasal speech to nonsense, which was super-easy.
- The day of my reading, I was JUST AS NERVOUS as an in-person reading. That was interesting. Doing this also fulfilled a childhood fantasy of being a news anchor. I think many people might not have been nervous doing this as I was, but I am old-school enough that Skype and FaceTime both make me want to throw up for some reason (like… you can’t actually make eye contact with people.) Nevertheless this didn’t feel as weird as those platforms, and I happily couldn’t see anyone’s face beside my own. I read, and people watched, and then they typed questions in the comment field that I could answer. I answered some of them, and I sort of rushed those because I was self-conscious, but overall I think the whole thing went well, and I said, “I love you” a lot. The best part was feeling really immediately connected to a lot of friends. It was intense!
- I said goodbye and did a celebratory adrenaline lap around the house and ate some chocolate.
- Later after I’d calmed down, I downloaded the file and tried to upload it into my page to work on the captions. THERE WERE NO CAPTIONS, or rather, no option to generate them. This was super-annoying. After some more Googling, I learned that Facebook will only do captions (I think for longer files) for pages that are “verified.” I went on a tangent trying to prove that I am a real “business” and uploaded some tax forms and in general got frustrated. This part still hasn’t resolved yet, and I ended up getting rejected. I think you need an official listed phone number connected to your business, so universities would probably fit that bill. Anyway, whatever, Mark Zuckerberg.
- Then I turned to YouTube. It’s very worthwhile to set up your own YouTube account so you can upload content. YouTube saved the day. I uploaded the mp4 file to YouTube, and then I panicked because someone online had said that captioning was available, but once again it was not there.
- I paused for despair, but it turns out that this pause was functional. While I was despairing, YouTube was processing my file. The option for YouTube to generate captions doesn’t show up immediately, especially with a longer file. I went back to YouTube and after Googling some how-to’s, I figured out how to see the captions: go into the “Video Manager,” then edit the file, then click on the last option at the top menu bar, “Subtitles/CC.” The captions show up. If you click on “English (Automatic)” that is the rough version of your captions, and then you have to re-save your corrected version. Google a how-to if you’re nervous about this.
- I scrolled through the captions, correcting and punctuating. It was really easy. Then I published!
- I am inordinately proud of the captions that showed up beneath me, which you can see here (if the captions don’t show right away, hover over the bottom of the screen and click the CC button):
- That is completely and utterly it. Because I did this at home with wifi and my computer, the video quality is so much better than anytime I have been filmed giving a reading. I was actually surprised at how easy this was. Doing this can be considered literary citizenship work aimed at broadening and diversifying our audiences. If you are interested in other resources for making your literary and other events accessible, you can look at this collection-in-progress of accessibility resources gathered and curated by Action Together Southeastern Massachusetts.
- My son watched the first two seconds of the video and made fun of how much of a nerd I am, because really: who starts their online reading with “Woohooo!” and two index fingers in the air? Me, that’s who.
Sonya Huber is irrepressible. Additionally, she has written many wonderful books and also teaches at Fairfield University, where she directs the low-residency MFA program.
April 27, 2012 § 11 Comments
Managing Editor Sarah Einstein discusses a recent blog post on writing (and not writing) about a disability:
On the River Teeth blog, Jason Dutton has posted an insightful post about identity, embodiment, and personal narrative. He discusses the choices that face him as an essayist with cerebral palsy whose instinct is often to leave his disability off the page:
I tried to avoid it. For a while I entertained the idea that I didn’t need to mention cerebral palsy unless the reader needed clarification. But I couldn’t write about a birthday party without mentioning why it took a lot of effort to climb a set of stone steps in front of the birthday girl’s house. I couldn’t write about my longing to be a stage performer without revealing why I can’t perform. Before too long, I realized that cerebral palsy had affected nearly all of my existence in some way or another.
Dutton examines the difficulty of putting experience on the page. When he writes about the way disability shapes his actions–say, walking across the parking lot at work–he feels the mechanics of his disability take on too much weight, that the essay becomes darker than he wants it to be. His impulse then is to reassure the reader, to normalize his experience, to say that he’s okay.
Except that’s not honest either, because getting tired in a parking lot isn’t fun. I’m lying when I’m cheerful and I’m lying when I’m not, and I don’t know how to find the honesty in between. But maybe it’s enough to start by admitting when my words don’t feel quite true. Maybe writing about the honesty of disability will help me recognize what I feel, name the emotions I don’t know, chart the points at which “true” and “false” are so interconnected as to be rendered inadequate descriptions. Maybe finding the honesty of disability is much like exploring the honesty of betrayal or love or life, and maybe writing about disability isn’t much different, or any less significant, than writing about anything that is real and true.
And we agree. Writing about disability isn’t any less significant than writing about anything that is real and true. Dutton’s insightful look at his own process can help all of us think about what we put on the page when we write ourselves.