September 22, 2020 § 3 Comments
By Mialise Carney
I found God in a dusty Christmas Tree Shop on Cape Cod when I was seven years old. God was a white and gold pocket Bible my grandmother insisted on paying for, pressing it into my grimy, sweaty kid hands. I was enthralled by the hastily painted gold “My First Bible” lettering on the faux leather cover, the thin, unraveling ribbon-bookmark, and the plastic smell of the waxy pages, full of tiny, unknowable, archaic words but so easily ripped.
That summer, I dragged my mother to every church within a twenty-mile radius. I attended every Saturday and Sunday mass regardless of denomination, sometimes two a day. I wanted the coolest wood beneath my feet, the brightest stained-glass windows, the highest steeple, the hollowest stone echo to reverberate my restless bones. I wanted to feel infinite and tiny, awful and holy.
Molly McCully Brown parallels these feelings in her recent essay collection, Places I’ve Taken My Body, where she examines her life with cerebral palsy, a painful movement disorder developed at birth. McCully Brown was also captivated by religion and places of worship as a child, especially during a family trip to Spain where she climbed to the peaks of ancient cathedrals and threaded her body through tiny monastery doors.
The memory of her time in Spain leads her to a six-week artist’s residency in Bologna, Italy. Bologna is a beautiful, ancient place full of antique shops and historic churches, but it’s also home to uneven cobblestones, creaking staircases, and murky bars, many inaccessible to her wheelchair. Tired and hurting, McCully Brown writes from her Bologna apartment about the guilt of being unable to experience the city as someone able-bodied. In “In Smoke and Exhaustion,” she writes, “It is unforgivably selfish to have taken this opportunity away from someone who could make more expansive use of it . . . who could tell you, after weeks in this old and stunning city, about more than the hands of the people who smoke here: how they are beautiful, and moving, and then gone.”
McCully Brown highlights how travel is framed by an expectation of the able body, that a disabled person is viewed as selfish for wasting an opportunity if they are not able to climb a hundred decaying steps to see a sunrise or kneel down to pray at a church. Yet, she parallels this expectation by offering what she can of her time in the city: an observation of hands, the impermanence of smoke, present like the city and always in the process of going, moving on.
McCully Brown examines the complexities of anger and its role in her life. In childhood, anger fueled McCully Brown’s determination to recover from multiple surgeries, live with daily painful muscle spasms, and claim her independence to travel alone. But during the uncertain year between undergraduate and graduate school, McCully Brown’s anger became a forest fire, hot and unwieldy, constantly smoldering just underneath the surface. In “What We Are,” she writes, “Some fine thread of devotion has always run through everything I do. It’s tiny and shining and down there somewhere, even overgrown by rage.” Anger is a necessary tool for survival, but it needs to be patiently cared for—a wild, bright forsythia bush cut back each spring to make room for the flowers waiting to grow underneath.
McCully Brown complicates her ideas about survival, exploring memory and what it means to forget in order to survive. As a child she memorized poems, repeating them to herself at night, a disembodied voice swallowing her spasming and aching body until she existed in someone else’s words. As an adult, she imagines the childhood body and its memories, the body that climbed trees and chased her brother in the uneven, roaming fields. In “A Brief Litany of Forgetting,” she writes, “If the space forgetting engenders is an emptiness, a missing thing, a wound, then it is also the field burned on purpose, without panic, to make it fertile for another crop.” What our bodies forget, what that forgetting leaves behind, isn’t a void, but a clearing, ready to be used again, thankful for what came before.
Although I no longer worship a god, I feel a deep appreciation, a humbling, when I stand at the edge of my parent’s yard and look to the swampy woods where I spent most of my childhood, lush and full in the muggy New England summer. I recall the moment when McCully Brown helps her parents move out of her childhood home. She stands at the edge of the field, gazing out to where she knows her favorite climbing tree hides in tall grass, swaying and warm. She knows the tree is there, hidden in overgrowth and she wants to see it again, to return to the memory of it. This itself is a type of religion, a longing to remember a place we are unable to return to, hopeful that the memory, unburdened, is enough.
Mialise Carney is an MFA student at California State University, Fresno. She is a multimedia editor at The Normal School and a creative nonfiction editor at Nightingale and Sparrow. Her work appears in Atlas and Alice, Menacing Hedge, and is forthcoming in Your Impossible Voice. Follow her on Twitter @mialisec.
This Blog essay is part of our September 2020 special focus on Experiences of Disability. Read our guest-edited special issue of the magazine for more.
September 18, 2020 § 4 Comments
By M. Leona Godin
Haben Girma’s memoir, Haben: The Deafblind Woman Who Conquered Harvard Law contains many gripping moments. For example, in the opening scene, her father is taken off the plane in Ethiopia, leaving seven-year-old Haben, with her limited vision and hearing, to puzzle out the mystery of his absence and how she will make it home to Oakland California by herself.
Haben: The Deafblind Woman Who Conquered Harvard Law also contains many humorous nuggets about navigating our society’s rampant ableism that creeps even into the mind of her little cousin who demands Haben make him a peanut butter and jelly sandwich, while insisting that blind people cannot make peanut butter and jelly sandwiches: “You said a blind person can’t make a PB&J. So how can I make you a PB&J?” she asks him to which he responds: “But I saw you!”
“His personal observations contradict the ‘truth’ he learned from society that all blind people are incompetent,” writes Haben. “I want Yafet to reject ableism. If he says that a blind person can make a PB&J, then I’ll make him one.”
Haben: The Deafblind Woman Who Conquered Harvard Law strives to dismantle ableism in many ways, one of which is to confront the inspiration porn impulse head on. “Tell her she’s very inspiring,” says a man at a Harvard mentorship social. “I cringe inwardly,” writes Haben. “People with disabilities get called inspiring so often, usually for the most insignificant things, that the word now feels like a euphemism for pity.”
A tenacious and kind impulse to facilitate understanding being one of her most useful and charming traits, Haben does not let the “inspiring” bit get her down. Instead she thinks, “when a nondisabled person uses the word to describe a person with a disability, it’s a sign that they’re feeling overwhelmed or uncomfortable.”
This man, whom Haben’s interpreter had brought over at Haben’s request, refused to use the ingenious system she’d come up with to communicate with fellow students in crowded situations where her hearing impairment makes it impossible for her to participate in casual conversation. It involves a wireless keyboard and a braille computer. As the person types, Haben reads the braille on the display and responds with her voice. She explains her system and asks the man if he’d like to try.
“It’s okay,” he says. “I’m enjoying watching you two. This is my card. It was very inspiring meeting her. Tell her she’s beautiful. You ladies take care.”
He walks away, and Haben’s interpreter asks (via the keyboard he refused), what she thought of the encounter. Haben, like so many disabled people I know, uses humor to diffuse potentially soul-crushing encounters. She rests her chin on her hand and says, “That was…inspiring.”
I read the ebook version of Haben: The Deafblind Woman Who Conquered Harvard Law using my wireless braille display with my iPhone. Sort of. As someone who started life sighted, spent three decades visually-impaired and only recently became totally blind, I did not learn braille as a child, so I haven’t anything close to Haben’s skills. My go-to accessible technology is text-to-speech software. Often I go back and forth with an ebook—reading braille when I have two hands and listening to my electronic reader when I’m eating or washing dishes.
Perhaps it was because she entered the school system seventeen years after I did—in the post-ADA (Americans With Disabilities Act) era, or perhaps because she was losing hearing as well as sight, Haben learned braille at an early age. This is sadly not the norm. Many visually-impaired children are forced into using large print for as long as their eyes hold out and are then encouraged to use speech synthesizers. Often this is because many teachers of the visually impaired do not know braille themselves. The upshot is that only about ten percent of blind people read braille.
Thus I loved reading about Haben’s undergrad experience at Lewis & Clark College, where she was the first braille reader to enter their disability services center, which didn’t “phase them one bit.” With a “pioneering spirit” they embraced the challenge: “They purchased a braille embosser, purchased braille translation software, and then spent the summer learning how to produce braille. They’re not afraid of the unknown; they learn, explore, and discover for the sake of their students and the betterment of themselves.”
Haben demonstrates how her successes are made possible by a system that supports accessibility. Likewise, many of her challenges are the same so many of us face. This is why, I think, she reminds us of the statistics behind her personal struggles: “Around seventy percent of blind people are unemployed.” Although she graduated high school as valedictorian and had an excellent college GPA, “The seventy percent unemployment rate still managed to claim me, leaving me jobless in Jobville, Alaska.”
These reflections come during a summer in Juneau, where she’d sent out application after application to temporary jobs that open up to accommodate the heavy tourist season, and received interview after interview, with no offers: “When you do everything right and society stomps on you, over and over, it creates a piercing, gut-twisting pain. It causes you to question the conventional wisdom that a person who works hard will always overcome obstacles.”
It’s not just Haben’s considerable successes that one remembers from this extraordinary memoir, but also her many invocations of the difficulties disabled people face all the time. Haben’s story shows how necessary and beautiful it is to strive. And continue striving.
Yes, Haben: The Deafblind Woman Who Conquered Harvard Law contains many exhilarating moments, like when she climbs up an iceberg dropped by the Mendenhall Glacier and then pushes herself down the ice slide into the unseen, unheard unknown, but it’s the quiet reminders of how success and confidence grow slowly and cumulatively, like the process of glacier formation itself, that make this book memorable.
Leona Godin is a writer, performer, and educator who is blind. Her writing has appeared in The New York Times, PLAYBOY, O Magazine, and Catapult, among others. Godin was honored to be a 2019 Logan Nonfiction Fellow. She founded Aromatica Poetica, an online magazine exploring the arts and sciences of smell and taste as a venue welcoming to, but not specifically for, blind readers and writers. Her personal and cultural history of seeing and not-seeing is forthcoming from Pantheon Books.
August 17, 2020 § 10 Comments
By Nancy Nguyen
Recently, I attended a knockout virtual reading highlighting writers with disabilities. Not only was I introduced to work that would otherwise be disregarded under “normal” circumstances (“normal” meaning auditoriums with steep ascending seats or the upstairs of a seedy bar that doesn’t have an elevator), but I found myself paying more attention than usual. Seamlessly, the facilitator handed off hosting privileges to each reader, and the highlighted reader shared their screen while they read aloud. In any other virtual reading circumstance, I would’ve opened my spiral notebook and sketched flowers as I listened, but this reading took accessibility a step further by sharing their manuscripts on the screen to accommodate the hearing impaired. As I read and listened, I was astonished by how easy it was for me to follow along.
Growing up, I was a quirky kid, whimsical with a limitless imagination. I would later learn that these descriptions were euphemisms for my chronic inability to focus. I was a habitual procrastinator, often guilty of overlooking small details, and I would automatically zone out upon hearing the monotonous drone of the priest’s homily during mass. It was only in graduate school, at the age of 28, that I went to see a therapist for the first time. After our second session, she graciously referred me to an ADHD specialist, who said I am textbook inattentive: limited attention span, good at cramming, painfully late diagnosis.
After shelter-in-place, I was lucky to find a job teaching writing to kids online. For the first time in my teaching career, I have been able to create my own work schedule and found a rewards system that works the best for me. For instance, I set up a timer for grading, bracketing fifteen-minute internet-browsing breaks between papers. When I have to buckle down and grade several papers or write up performance evaluations, I put on pants and sit out on my porch, which activates the Pavlovian part of my brain. I have also found more time to read, about half my reading made up of audiobooks I listen to on my walks. And of course, I’ve been spending my free evenings at virtual events.
Attending a virtual reading usually only requires an RSVP and a Zoom account. As the days in quarantine melt together like Jolly Ranchers in the cupholder of a hot car, I have been taking advantage of Zoom’s option to turn off my laptop’s video camera. Suddenly, it doesn’t matter how many days I’ve gone without showering, and I no longer worry about appearing like a well-behaved attendee. When I went to obligatory readings in graduate school, I practiced good attendee manners (left my phone in my backpack, refrained from doodling in the margins of my notes, kept foot-tapping to a minimum), but I usually came away having not retained much information. In the unchecked safety of my own home, however, I’ve been trying out ways to focus my attention. I’ve been sketching objects around my room and folding origami. Lately, I’ve been playing the online board game Ticket to Ride on my phone, which has been the best method thus far.
Unexpectedly, the pandemic has encouraged me to realize the value of my unique perspective, how much it lends to my sense of humor, my ability to problem solve, and of course, my writing. During lockdown, I’ve discovered virtual readings, writing groups, and discussions. I’ve found organizations that uplift marginalized voices, like Radix Media (which organized the reading highlighting writers with disabilities and aims to spotlight marginalized groups in their monthly virtual readings) and Kweli Journal’s International Literary Festivals (a virtual ten-week long event dedicated to BIPOC writers that will recur annually).
No one really knows how long this pandemic will last. We can only glean the infection numbers and the ways our leadership has failed us in order to make conjectures and prepare. My single hope is that we observe all the ways shelter-in-place has improved our lives, that we remember these improvements when things become “normal,” though maybe we should realize by now that “normal” is a mirage. I hope working from home becomes more widely accepted, that we commute less and find more sustainable ways of living. That virtual readings, workshops, and events strive to become even more accessible and recur even after shelter-in-place is officially lifted. That we realize how many people would be excluded without them.
Nancy Nguyen is originally from Orange County, and she now resides in Baltimore. She was a 2019 Aspen Words Emerging Writer Fellow, and she has received support and scholarships from the Sewanee Writers’ Conference and Kweli Journal. A selection of her work can be found in NANO Fiction, Pidgeonholes, and Jellyfish Review. She writes about women, environmentalism, and the ways in which capitalism stands at odds with family bond and loyalty.
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.