A Review of Disability Visibility: First-Person Stories from the Twenty-First Century

September 23, 2020 § 1 Comment

By Adam Hubrig

At the heart of In Disability Visibility: First Person Stories from the Twenty-First Century is a sense of disabled community. Editor Alice Wong describes finding other disabled voices in print and gathering file folders of clippings of disability stories that spoke to her. Wong writes “My collection led me to community” (xvi). The collection of disability stories Wong collects here similarly leads me to community, and Wong’s work as editor of this volume extends her legacy of disability activism through the Disability Visibility Project.

As a reader, I am bored with disability stories that cast disability as a monolith. Disability Visibility features an immersive cross-section of disabled experiences in 38 essays, each sharing embodied crip wisdom in bursts of nonfiction. While the invocation of “disability” much-too-frequently means white disabled experiences, this collection shines in bringing intersectional representations of disability to light, which helps provide a glimpse into the  expansive vibrancy of disabled lives while presenting a range of disabled experiences that include disabled perspectives on Muslim faith (Maysoon Zayid), indigenous chronic illness (Jen Deerinwater), being deaf and incarcerated  (Jeremy Woody, told by Christie Thompson), parenting with a disability (Jessica Slice), and many others.

The volume is organized around four sections, “Being,” “Becoming,” “Doing,” and “Connecting.” “Being,” the first of these sections, captures different aspects of being a disabled person. As a disabled reader, I appreciated the thoughtful approach these writers took in detailing the difficulties of disabled lives, in ways nondisabled readers might not expect. Often, these difficulties are the assumptions of nondisabled people. “The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist,” Harriet McBryde Johnson writes in the first essay in this section.

While pop culture disability representations often center “overcoming” narratives analogous to bullshit “motivational” posters like “the only disability in life is a bad attitude,” these essays capture a complex range of feelings about disability. The second section, “Becoming,” centers the lived experiences of disabled people who, as Sandy Ho writes in the section’s “Cafei to Canji,” “more often than not survive along its outermost edges.” These essays capture a range of disabled voices expressing the depth of meaning of their own disabled existence, and features a range of expressions of that meaning in rage, in acceptance, and in joy. As Keah Brown writes in “Nurturing Black Disabled Joy” midway through this section, “My joy is my freedom–it allows me to live my life as I see fit.”

The third section, “Doing,” revolves around the labor of amplifying disabled voices and experiences. In “The Antiabortion Bill You Aren’t Hearing About,” for example, Rebecca Cokley addresses the disingenuous invocation of “disability” by a political agenda that seems profoundly disinterested in disabled peoples’ well-being. In “Lost Cause,” Reyma McCoy McDeid describes the ableism leveraged against her as a developmentally disabled person, as well as her advocacy efforts. This section demonstrates how disabled advocacy–for ourselves and others–is just as diverse as disability itself.

“Connecting,” the book’s final section, features essays reflecting on disability as community. In “Disability Solidarity: Completing the “Vision for Black Lives,” the Harriet Tubman Collective writes “any struggle against white supremacy must also address all of its interrelated flaws–including ableism and audism.” As a section “Connecting” is disabled finding disabled roots and starting grassroots disability movements, from contributor Eugene Grant who finds a dwarf role model in Benjamin Lay to the disability justice collectives of Black and brown disabled folks described by Leah Lakshmi Piepzna-Samarasinha.

As I continue to seek out community as a multiply disabled reader, this collection of disabled perspectives is everything. I reflect on “The Beauty of Spaces Created for Disabled People”–the final essay in Disability Visibility: First Person Stories from the Twenty-First Century –where s.e. smith writes about the importance of having spaces crafted specifically for marginalized people. Frequently, smith writes, disabled people are often made to feel isolated because of ableist policies. in sharing space with other disabled people a different kind of space is created–“crip space, a communal belonging, a deep rightness that comes from not having to explain or justify your experience” (272). For me, this volume is a portable crip space, a space where I can join other disabled people in their joys and their struggles.
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Adam Hubrig is a multiply disabled caretaker of cats. His writing has appeared in Typehouse Magazine and The Lincoln Underground. He currently resides in Huntsville, Texas, where he is an Assistant Professor of English at Sam Houston State University.

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.

Everything’s Coming Up Photocopies: Medical Records for the Writing Process

September 23, 2020 § 6 Comments

By Alysia Sawchyn

I was nineteen, maybe twenty, the first time I requested my medical records. Back then, I was still on my parents’ insurance, and they were filing a claim, hoping to be reimbursed, at least in part, for the expensive drug rehab where they’d sent me. It was a facile experience; I barely lifted a finger. My role was a HIPAA formality—I (resentfully) waved at the familiar receptionist, doctors, and nurses and said, Yes, my parents can access my medical records. The staff presented my father with a thick manila envelope, and I practically skipped out the front door, still enjoying my freedoms. Nothing to it.

Seven-ish years later, I started writing a book about my mental health diagnoses and misdiagnoses, which eventually became A Fish Growing Lungs.  My memory is not great (see rehab above), and some of the dates, appointments, facilities, and doctors muddled together, making drafting difficult. I wanted specifics, and my old medical records would be able to provide at least some particulars, untainted by time. I envisioned the recorded dates like scaffolding around which I could build a structure made of memory.

The list of doctors and institutions I drafted was daunting both because of its length and its incompleteness. I live by my checklists, and excerpts of this one read like a classified document:

  • (firstname?) Jones — psychiatrist, private practice? NoVA, 2004/2005-2006
  • Psych ward doctor — Psych ward (??), state run? NoVA, March 11? 2007
  • Doctor? NP? — Clinic, Greensboro, NC, March/April? 2007
  • (firstname) Sharif & Dr. Jarod Diaz — psychiatrists, Rolling Hills Treatment, Clearwater, May 1-30 2007?

Imagine calling a doctor’s office and saying something like, Hi, yes, I think I was a patient at your institution seven-ish years ago, could you please check if I was actually there and, if so, could you please send me copies of my medical records? The process was an odd mix of social engineering and verifying my own identity eight different ways on a phone line.

Only one acquisition was relatively straightforward: My longest-standing former psychiatrist (whose name I remember and who hadn’t moved offices or closed their practice) immediately said, Yes, and hardcopies were available for me to pick up the next day. I think he may have even waived the fee.

The rest of the items on my checklist were a mix of awkward; unattainable; or achieved only by sheer, dumb luck. One of my former therapists basically said, Ugh, do I have to; they’re somewhere in my storage unit, and at that time I still had not yet had enough therapy to say, Yes, Jennifer, please go get my goddamn medical records.

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Much harder than acquiring my medical records was reading them. Writing personal essay necessitates constructing a persona on the page, and while I am accustomed to trying to make sense of my past self, this added another layer of complexity. This was me trying to make sense of how others had made sense of me. Reading the documents felt like handling a nesting doll made out of so many jellyfish. My first few attempts ended with me shoving the stacks of paper under my bed and going outside to smoke. The solution I ultimately settled on (after having to reorder the documents a few times) was to camp out on my balcony with a pack of cigarettes and chain-smoke my way through the folders. It wasn’t graceful. To see oneself through the eyes of others is charming when you’ve just started dating; it’s markedly less so when you’re having a psychotic break in the ER.

Earlier drafts of Fish relied heavily on these doctors’ notes. I incorporated direct quotes into several different essays, and one was entirely devoted to the nuances of my diagnoses juxtaposed against sections of previous and current versions of the DSM. Over the course of about a year, different readers of that particular essay, creatively titled “Diagnosis,” flagged it as bulky and dragging, and each time I made appreciative mhmm sounds before hoping the next reader would say something different.

I tell people I am a slow writer because I need lots of time between drafts to be able to see what I’ve actually written, instead of what I’d wanted to write. A lot of scholarly work exists around illness narratives—the hows and whys of their construction; their benefits and potential pitfalls, both for the author and audience; how they can inadvertently reinforce medical institutions’ granting power of legitimacy—but I’m going to leave all that aside and say that, in the end, I cut “Diagnosis,” salvaging only a few darling phrases to sprinkle throughout the remaining essays.

When I was finally able to set my manuscript aside for half a year, I returned to it to find that I agreed with my earlier readers’ comments. What I found was not an essay that added to the collection, but a document I’d created in order to write all the other essays around it. “Diagnosis” was how I’d made sense of how others had made sense of me; the only way I knew how to unpack those pesky, slippery dolls was to write them out.

The moral of this is not “Do whatever your readers tell you to do” (though I did have excellent readers). The moral is “It takes every word it takes.” Today, my medical records are in a plastic bin in my attic crawlspace labeled “BOOK 1,” alongside all the other articles and handouts and lists and notes I read and made for Fish—not dogma, but just another type of source material. I had to read and write every sentence to get to the end. All this digging and drafting happens not because everything I uncover should make its way into the final written product, but because the process is the bulk of the work, and thus, where the bulk of the joy resides.
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Alysia Sawchyn is a Features Editor at The Rumpus. Her essay collection about misdiagnosed mental illness, A Fish Growing Lungs, was published by Burrow Press in June 2020. You can find her on Twitter @happiestwerther

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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.

A Review of Places I’ve Taken My Body by Molly McCully Brown

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.
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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.

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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.

Negative Space: At the Intersection of Disability and Writers’ Online Complaint Culture

September 22, 2020 § 8 Comments

By Amy Long

I noticed it first in my MFA program. Despite the opportunity costs inherent in leaving the workforce to return to school, most of my peers spent more time complaining about writing than they did writing. “I have to write a story for workshop,” they said in whining, exasperated tones when we passed in the halls or met in our shared offices. The complaints baffled me. Weren’t the pieces we had to write for workshop the reason we’d pursued the degree? Why had these people even applied to MFA programs if they didn’t want to write?

Our program offered us full funding, livable stipends, and good insurance in exchange for the low course loads we taught. Rent was cheap. We rode the bus for free with our student IDs. At the student health center, we got free counseling, even psychiatric care. We had instant friends and faculty who treated us as peers. We got Fridays off. We had little about which we could reasonably complain. Most of us did anyway.

I was different. As soon as I finished teaching my 11 am Writing and Rhetoric class on Mondays and Wednesdays, I hurried home to eat, take a painkiller—maybe two—and write until the sun set. I reserved Tuesdays and Thursdays for doctor’s appointments, therapy, errands, but just as often, I woke up, took two oxycodone, had a Coke and a few handfuls of cereal, and sat down to write on my laptop.

Given my disability, I was lucky I could write at all. I’ve had debilitating daily headaches since I was three years old and have spent the last two decades trying and failing preventive drugs, invasive procedures, and expensive alternative therapies. By the time I started my MFA, I knew that only opioids relieve my pain. My off-campus doctor wrote me a dose twice as high as the one I’m forced to accept now that physicians, government agencies, insurance companies, and others have restricted or de-incentivized opioid prescribing in misdirected efforts to curb overdose deaths and wage an unwinnable war on addiction.

I can think of few conditions more damaging to a writer than pain in the place where she thinks, but on my MFA dose, I functioned so well even our program director didn’t know I had a pain problem; on my post-grad dose, I’m lucky if I can write for two hours on a “good” day. Since writing time is harder to find and sustain outside academia, I assumed the culture of negativity around writing would stay there. But I hear echoes of I have to write a story for workshop all over the Facebook groups and Twitter threads that comprise the online writing community.

Online, writers compare the act of writing to torture, abuse, insanity. Their language assumes that anyone who enjoys her own artmaking is, among other things, an uncool goody two shoes harshing everyone’s deprecation buzz. The worst thing about listening to someone talk about how much they love writing is having to nod along in agreement reads one genre-typical tweet. Other writers commiserate in the comments or with clicks on posts’ little read hearts. Negativity has become something of a currency or writerly necessity—a way to make friends, create personas or “personal brands,” gain followers on social media, and signify in-group belonging. The half-jokes and memes serve as a rhetorical bonding exercise that all but requires a body unencumbered by anything approaching disability.

To not feel your body while writing—to not need to tune out pain, to rest, to wait for your next dose of relief—is a privilege too often ignored or left unquestioned. Instead, we allow participation in semi-ironic social-media threads to act as a never-ending networking event at which writers interpolate writing as an act of self-loathing or a cruel taskmaster to whom we voluntarily report. Complaints about writing broadcast to others not only that you write but that you “get it” in a way hobbyists (coded feminine) never will. “Real” writers, we are made to understand, pour so much of their minds and bodies into their work that they’re driven insane, even tortured or abused, by blank pages, flighty muses, narrative or poetic structures with which they choose to experiment. That their metaphors often invoke mental illness or physical pain reinforces and highlights the normative, implicitly abled bodies behind all those 240-character laments about a craft I practice from my bed.

But what might a disabled writer’s comment look like under that kind of tweet or Facebook post? If I say Yeah, it is hard to nod along when other people say they love writing; I haven’t been able to write since my pain flared last month, and I miss it so much that just seeing your tweet breaks my heart, I break the genre’s unwritten rules. Real hurt, actual illness, complaints expressed not metaphorically but as descriptions of writers’ literal pain aren’t funny; they don’t invite retweets or good-natured riffing or even lend themselves to metaphor. The different ways abled and disabled writers express frustration or displeasure with our shared art reveal inequities sustained and kept invisible by the cult of negativity: what we have that you don’t, the barriers we face that you can’t see, what you take for granted that we can’t.

Although my subpar pain management means I never feel as good as I did in my MFA years, I still write most days; it isn’t easy, and often I feel left out of this ritual we enact to signify belonging. I don’t hate writing. I love opening my latest draft and putting new ideas into it. On days when my head hurts so much I can’t look at a computer screen, I don’t relish the opportunity to take a “cheat day” or “go easy on myself.” I hate that my head so often robs me of precious writing time. But I’m even more angry with writers who take their pain-free heads for granted.

I’m disappointed so many of us feel compelled to hate this magical thing we get to do and that we don’t have more affirming ways to strengthen our collective ties. I don’t know exactly what forms those might take, but a discourse centered on the joys and frustrations of creative work might give us all a more robust, inclusive vocabulary for discussing what we love about writing and a more honest way to talk about the challenges we face, whether shared or unique to our communities. I don’t want to censor other writers or dismiss the pleasure I assume they derive from expressing negativity; we all need to vent. But our current approach too often excludes the voices of disabled writers and others who must steal our writing time and can’t afford the time it takes to tweet about the abundant opportunities healthy, abled writers are lucky enough to squander.
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Amy Long is the author of Codependence: Essays, selected by Brian Blanchfield as the winner of Cleveland State University Poetry Center’s 2018 Essay Collection Competition. Her work has appeared in Diagram, Hayden’s Ferry Review, Ninth Letter, and elsewhere, including as a Notable Essay in Best American Essays 2019.

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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.

A Review of Out of the Crazywoods by Cheryl Savageau

September 21, 2020 § Leave a comment

By Bruce Owens Grimm

For most of my life, I thought Tarot cards and Ouija boards were for communication with the dead. This is especially embarrassing as someone known for being interested in the supernatural. But lesson learned. What I know now is that both have the purpose of contact, connection. However, Tarot’s a reflection of our own energy back to us rather than an open hotline with ghosts. Understanding the purpose of Tarot is important when reading Cheryl Savageau’s insightful and magical memoir-in-essays, Out of the Crazywoods, as she often consults one of her sixteen decks and explains why early on in the book, “I’m trying to find my life in these cards.” She desires a connection to herself as she learns how to manage her “late in life” diagnosis of “classic bipolar” and how the diagnosis makes her “not ‘normal’, whatever the fuck that is.” It’s a conundrum that many people with mental illness deal with at many points post-diagnosis. Trying to reconcile her past and present self is the reasons she consults the cards. Her search for who she has become provides the current that propels her story.

Out of the Crazywoods contains one hundred and seventeen lyric essays, each no more than a few pages. Savageau, an Abenaki poet and artist, shows her diagnosis rippling through each part of her life in brief and stunning prose. There is struggle, as when she has difficulty keeping a job because she must run to the bathroom, a place she feels safe, due to her frequent panic attacks. There is joy as when she spends time with her grandchildren and cooking for her family. Everyday things shift around her as in the essay “Wet Ashes,” where a smell in her house confounds her because she cannot locate it, “this damn house is haunted with the smell of wet ashes.” Her husband doesn’t smell it. Savageau, who is in her mid-fifties at the time, tells her therapist about the scent and the therapist suggests it’s an olfactory hallucination, which is common for people with bipolar. However, once Savageau and her husband divorce, the stench of wet ashes disappears.

Water guides, reflects. As she says in “Bagw and Tekw,” the books second essay, “all life is water.” Savageau is our guide through her life, and, of course, this book. She states as such in this same essay where the first sentence, “we are studying language together.” This is true in multiple ways. She imparts lessons in Abenaki (“Tekw is moving. Bagw is stillness. River is tekw. Lake is bagw), in this essay as well as throughout the book. But she also provides a way to recontextualize the language around bipolar in terms of stillness and movement rather than up and down, which makes it easier for her to understand its effect on her. It’s encouraging to think of mental illness descriptors in terms of nature. Makes the ebb and flow of symptoms seem less mysterious. Yet, as she says later in the book, “It is so much easier to write about mania…because there’s always something happening…depression is the lying down of desire.” Savageau doesn’t romanticize mental illness but gives us a peek into how she processes it in poetic images. As a poet it’s simply how her brain works.

Like Tarot, a book is a form of communication. At many points while reading Savageau’s memoir, it felt like I was having an actual conversation with it. A dialogue. I wrote responses and told part of my story to her words. I don’t have bipolar, but I do have major depression, generalized anxiety disorder, and PTSD. Recently, I turned forty-four and through a conversation with a friend, reflected on how many versions of myself I’ve had to let go, let die, so that I could live. It felt like Savageau understood.

Letting past selves go is not easy. In “Blackouts” Savageau “comes out” to an ex-girlfriend, “Guess who’s bi?” I enter it as a subject line on an email to an ex after my diagnosis. In the body of the note, I say, ‘polar that is.’” The two of them meet for lunch and Savageau’s unnamed ex-girlfriend says she is not surprised by the diagnosis, “she knew something was up when I tipped over the dining room table during an argument that time.” Savageau is shocked. She has no memory of this happening, “Blackouts, I’ve been having blackouts. For most of my life, probably. I am not the person I thought I was. And if that’s true, who am I?” When you’re diagnosed with a mental illness, often other people want assurances that you are the same as before. However, no one needs that reassurance more than the person diagnosed. As Savageau does here, you question everything about yourself. You have to start the process of finding yourself again or maybe truly for the first time.

Writing is the bridge between Savageau’s conception of herself before and after diagnosis, it “is one of those places where I am not crazy, the madness of poetry is not the debilitating madness of bipolar.” While she continues to write, she does disconnect from the Native writing community. She increasingly focuses on her Tarot cards – her solace in her isolation. A young writer she’s mentored reaches out, drives Savageau to the mountains, “the land works its magic. I put the Tarot cards away in their boxes. I accept an invitation to do a poetry reading. I slowly climb up from underground.” The climb is not easy. What’s important is beginning that journey. Ultimately, Out of the Crazywoods is a hopeful book. Prior versions of yourself may shatter, but you are not shattered. Out of the Crazywoods ends with an essay about the word Alnôbawôgan, “Becoming Human. It is a word of inclusion. It is the opposite of stigma.” Savageau takes us with her through the whirlpools and calmness so that we may see ourselves reflected, so that we know we are not alone no matter where the current takes us.
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Based in Chicago, Bruce Owens Grimm’s haunted queer essays have appeared in The RumpusNinth LetterEntropy, AWP’s Writer’s NotebookIron Horse Literary ReviewOlder Queer VoicesGhost City Review, and elsewhere. He is a co-editor of Fat & Queer: An Anthology of Queer and Trans Bodies and Lives, which will be published by Jessica Kingsley Publishers, an imprint of Hachette, in 2021. He has taught his Haunted Memoir: What Ghosts Reveal About Life workshop at StoryStudio Chicago and at Arizona State University’s Virginia G. Piper Center for Creative Writing’s Desert Nights, Rising Stars conference, which named him a 2020 Desert Nights, Rising Stars Fellow.

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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.

Pain, My Kin

September 21, 2020 § 3 Comments

By Travis Chi Wing Lau

Chronic pain does not require constant remaking of the world and of the self because it creates a new state of being: one becomes a person who lives with pain rather than a person or body in pain. The normative conception of pain as acute and temporary does not fully convey this. ~ Emma Sheppard, “Using Pain, Living with Pain”

Two weeks have passed since I flew during the pandemic from Austin to Columbus for my new job. Mercury, my gray tabby cat, thankfully slept most of the way, but I remained wide awake with my pain. I had reached that familiar threshold of ache—simultaneously sharp and dull—one that reminds me that I have yet again worked too hard against my body. A heavy box too forcefully lifted, a few too many times hunched over to clean a grimy bathtub or the floors. Action, reaction; pained, painful. No singular origin or conclusion, but a living spectrum beautiful in its fullness, in its shifting forms and intensities.

Yet even as I shuffled uncomfortably in my seat and processed the anxiety of relocating yet again to a new city, I felt accompanied by my pain. So often, I hear of pain described in terms of alienation or loneliness—that which someone deals with silently in isolation—but I have since felt a developing kinship with my pain. My pain who has remained a witness to every event in my life, who has provided the terms by which I understand them as meaningful events. This is the queer gift of chronicity: when the fantasy of “this will pass” collapses and the burdens of upholding it end, there is the gift of new kinship forged not from a remaking but a reacquaintance. Not merely resignation but redefining a sustainable relationship with pain who I thought I knew.

Learning to write honestly from this relationship has been the hardest but most profound shift in my approach to being a scholar and writer. Rather than trying to circumscribe my intimacies with pain within the act of writing or using writing to mediate my relationship with pain (which inevitably gives way to a futile, paranoid control over it), I have tried to crip my writing process toward a more compassionate invitation of pain into the precarious act of communicating ideas and experiences. A process that does not shy away from pain’s presence but is in fact constituted by pain and its vagaries. This, to me, is what a truly crip form does: poetry or prose that models the work of cohabitation with disability and chronic illness as kin.

In revisiting older work, I noticed such a desire on my part to speak for or over my pain or even to force out of it something we might call the “aesthetic” that neither respects pain’s complexities nor addresses it on its own terms. Pain’s terms are my terms, after all. Disavowing them or imposing someone else’ terms upon them was, unsurprisingly, that much more painful. As disabled writing is finally gaining recognition, I find myself thinking more about the painful cultures of writing in which we participate. So often we are, intentionally or not, encouraged to capitalize on our pain to be legible to audiences and publishers wholly uninvested in us as people living with pain. As with many BIPOC and queer writers, such rehearsals of our pain are seldom for us and in fact limit the horizons for how we collectively imagine pain and those who have relationships with it. While we might imagine futures without pain for those who have lived too long with it, we need to invest in more than just pain’s validation (we are here, we are in pain) and subsequent containment (a hotline, a statement, a short-lived balm). For those of us whose pain lingers, we have an opportunity to expand the narratives that we have long attached to pain by writing anew from that intimate space of kinship with pain. We can honor pain as a lived reality for so many of us, while also moving toward a less painful culture of writing and publication that fetishizes only certain forms and representations of pain. In the face of our current pandemic, a practice of painful kinship feels that much more urgent if only to enable reckonings with our own painful histories and institutions, our own respective relationships with our pain, and with each other as painful kin.
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Travis Chi Wing Lau is Assistant Professor of English at Kenyon College. His research and teaching focuses on eighteenth- and nineteenth-century British literature and culture, health humanities, and disability studies. Alongside his scholarship, Lau frequently writes for venues of public scholarship like Synapsis: A Journal of Health Humanities, Public Books, and The Los Angeles Review of Books. His poetry has appeared in Barren Magazine, Wordgathering, Glass, South Carolina Review, Foglifter, and The New Engagement, as well as in two chapbooks, The Bone Setter (Damaged Goods Press, 2019) and Paring (Finishing Line Press, forthcoming). [travisclau.com]

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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.

A Review of Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma

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.
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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.

Drawing The Wisdom Out

September 17, 2020 § 3 Comments

By Cameron Steele

At first, I thought I might be able to get away with romanticizing all the not writing I was doing during covid. After all, I reasoned with myself, almost no one wrote about our last great pandemic, the influenza of 1918 and 1919 that killed more people across the world than did all four years of the first world war combined. Unlike the explosion of narratives that have explored illness, human suffering, and pain in the centuries since, scholars agree those early 20th century writers didn’t have either the model or the impulse to make sense of pain the way writers have in the decades since the emergence of HIV/AIDs in the United States. “How to bring the [1918] pandemic and the narrative form together?” Ann Jurecic writes in the introduction to her book Illness As Narrative, “It is as if the project were unimaginable in the early twentieth century.” See? I thought to myself when I began Jurecic’s book in the late spring, it makes sense I can’t write right now. Those other writers couldn’t either. Ignoring the “flood of texts” since “those other writers” that have offered a path forward since then—offered ways to make meaning of, from, through, and against illness—I clung fast to the not writing. My body hurt, I did not sleep, my new baby was sick.

*

For a long time, my very small, very new baby was sick.

For a long time, I did not write.

Until I did, and here is how I started.

*

During the coronavirus pandemic, I, a woman living with mental illness, a mother with a new baby who appeared, by the accounts of his pediatrician and a battery of specialists, to be unfortunately, worryingly ill, have not been able to write.

Though I ostensibly have made my living from writing nonfiction about violence, illness, and pain, first as an investigative crime reporter in the deep south, and now as a graduate student teacher whose work examines those years against the backdrop of my own struggle fight diagnosis bulimia, (here the language always fails me, I don’t know what to call this thing I have been doing with food and puke and my body all these years or why the mind suggests it, even after all the books, all the rehab, all the medication, all the meditation, all the therapy, all the drugs), I haven’t managed to write a thing about covid since I locked down myself, my husband, and my new baby six months ago. The words fail me. The desire to read what other people are writing right now fails me.

*

What I read, I read out of obligation to my college best friend in Detroit.

She DMs me links to articles over Instagram and mails me essays clipped from her favorite magazines: Roxane Gay cooks through the pandemic, David Sedaris walks the footprint of New York daily, Toni Locy, our legal reporting professor from Washington and Lee University, rails against our alma mater’s mythologizing of Robert E. Lee in The Nation.

“I’m fascinated by how writers have been keeping themselves busy during this time,” she texts me. “And what they’ll have written at the end of it. I think it will be really important.”

“I totally agree,” I text back and feel anxiety and shame flame up against the mastitis in my left breast.

*

The baby shifts in his crib on the monitor. He’s finally started sleeping through the night, but his GI specialist in Omaha, during our last telehealth visit, was talking about feeding tubes, weighing the pros and cons of one down the nose (pro—it’s temporary, it doesn’t require surgery, con—it could actually make his reflux and feeding aversion issues worse) or one surgically inserted through the stomach (pro—less reflux and more sustained results, con—an invasive procedure requiring anesthesia and a hole in my baby’s stomach). I worry about karma, about his Virgo moon, about passing my own chronic mental health and digestive issues onto his new, perfect, tiny little body. I can’t write any more about this. It doesn’t feel good or enlightening or, to borrow a line from Maggie Nelson in The Argonauts when she refuses to discuss her baby’s early illness, “precious or rich to me.” But because my baby’s feeding struggle fight issue is truly the center of my life, the inflamed sun around which my days revolve, with no opportunity to meet up with friends, or escape to my office on campus, or even see my therapist face-to-face, this is all I can think about.

*

Also I think about a Twitter fight I observed with more than a little casual interest in my seventh month of pregnancy. Novelist Lucy Ellmann gave an interview in The Guardian where she laments the force of motherhood on new mothers, how the needs of the child winnow the mom’s attention down to only them, whittles away the capacity for focusing on much else. (“People don’t talk about how tiring, boring, enraging, time-consuming, expensive, and thankless parenthood is,” she said. And: “illness, worry, conflict, overcrowding, the relentless cooking, the driving, the loss of privacy, the repression of your own sexuality, the education dilemmas, the lack of employment prospects, and all the wretched insanity of adolescence – these are big deterrents”). So many women writers on my timeline were outraged—oh, the indignity of another woman saying that, what a retrograde opinion, I published three books while I raised my three kids under the age of five and got a divorce—that kind of stuff. I was frustrated then, reading the response to what seemed like an honest interview from a woman who’s done both her fair share of publishing and of having children. And now, during the pandemic, not writing anything, trying to raise a baby who’s been ill for the first four and half months of his life, trying to keep myself from relapsing into my own illness in isolation, I find myself living out Ellmann’s words, my attention narrowed down to a red breast, a baby scale, a hypoallergenic formula, a hospital bill, a tarot card and a few sentences scrawled out each morning to keep me sane, to keep me from feeling completely silent.

*

“Compassion can only flounder,” Susan Sontag wrote In Regarding The Pain of Others, when confronted with mass suffering like a pandemic, like a war, like state-sanctioned police violence. And yet, Jurecic argues (and models) in her book published six years after Sontag’s death, compassion can radically attend to the complexities and needs of intimate, everyday life. I want to say it was reading this, it was reading Jurecic that got me on the page again. But in truth, I had begun to write—more and more, every morning, for myself, in my journal—weeks before I encountered her book, and how it felt right and real to me. “Like any good book,” Lauren Slater writes when she encounters the work of philosopher Williams James in her own illness memoir Lying, “it did not teach me something new, but draw out the wisdom that was already there, inside me.”

*

The baby began to get better. The doctors disagreed over what went wrong. They still disagree about how to feed him, when to start solid food, what kind of weight he should gain to be healthy.

“I guess you can say this is where medical treatment is more of an art than a science,” our pediatrician told me. I guess so, I think I said, needing something more than that.

I hung up the phone. The baby cried, hungry and finally willing to eat, and I, finally willing to draw the wisdom out, rocked him, thinking : gotta start writing all this down later.

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Cameron Steele is a writer and instructor at the University of Nebraska-Lincoln. Her essays and poems have appeared in SFWP Quarterly, Poets.org, Great Plains Ecotourism Coalition, Entropy, The Fix, Bluestem Magazine, Red Paint Hill Poetry Journal, and elsewhere. Her poems won first place in the Gaffney Award for the Academy of American Poets in 2019.

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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.

Disability as Nuance, Disability as Craft

September 16, 2020 § 3 Comments

In the introductory conversation around Brevity‘s special issue on the Experiences of Disability, Sonya Huber asks her fellow guest editors Keah Brown and Sarah Fawn Montgomery to discuss how disability shapes their writing process, including ways in which their disabilities can change and deepen what and how they write:

Sarah Fawn Montgomery: Of course disability impacts my writing by sometimes limiting when, if, or how much writing I can accomplish, but disability also deeply informs my craft. It is subject and structure, influencing everything from framing and pacing, to detail and syntax. Disability has also shifted my writing practice. I know that I might not always be well enough to write, so I take advantage of any opportunities and am grateful rather than critical of the work I produce during this time. I recognize that long stretches of writing time are not always possible and have learned to write in short spurts and in unexpected locations. Sometimes I write daily, but many times I do not, and I do not feel guilty for taking time away to care for my body and brain. I understand this as another kind of writing practice, because caring for ourselves away from the writing eventually allows us to put words on the page.

Keah Brown: Disability impacts and shapes every aspect of my life. I am not just my disability but it is the lens through which I navigate the world. The writing process is no different. Earlier on in my career, I felt beholden to discuss disability, and that left me resentful, but as I have matured and grown, both as a person and professionally, I have realized that disability is a part of the nuance I bring to my work. The lens of disability has allowed me to get creative on the days my body won’t allow me to work at all. Shaping the way I approach work, disability is at the center of my work particularly in holding myself and others accountable, as well as giving me the opportunity to be assertive in what I need in order to create and when I need to say no. The truth is this: disability does shape my writing process from beginning to end in precious and obvious ways, but more important than words on the page, is the ability to shape me as a person. I am such a cliché, friends!

You can read the full discussion here.

And access our special issue, “Experiences of Disability.”

Between Routine and Utopian: Accessibility at Lit Events

September 10, 2020 § 4 Comments

By Amy Berkowitz

A few months ago, a friend told me they were watching a concert on YouTube Live when they were suddenly overwhelmed by grief. They were enjoying the music so much, and then they thought about how temporary the pleasure was: once quarantine was over, they wouldn’t be able to go to shows anymore, as most venues aren’t accessible to them.

The amount of high-quality arts programming that’s been made available online during COVID is dizzying: on any given night, I can check out a poetry reading, an artist talk, a concert, and a comedy show. But while this glut of diverse entertainment is exciting, it’s also bittersweet. For one thing, well, it’s the result of a devastating global pandemic. And on top of that, it’s only being provided now that everybody can’t go to live events. For sick and disabled people, it’s been painful to watch accommodations that have been denied to us—or even framed as impossible—for decades immediately manifest as soon as able-bodied people need them too. All of a sudden, remote work and virtual learning are the norm, and you can go to a reading without getting out of bed.

As a chronically ill writer who wrote a book about chronic illness (Tender Points, rereleased by Nightboat Books in 2019), much of my experience navigating accessibility has been around literary events. Right before shelter in place started, I did two readings back to back in New York and DC that have made a lingering impact on how I think about accessibility.

I generally make an effort to read in accessible spaces, and I was particularly committed to finding one for the New York event because I was appearing in conversation with a filmmaker whose work also centers chronic illness. I emailed my disability community friends, my art friends, my publisher—do you know an accessible, large-ish space that we could use for free?

I got a lot of almost-but-not-quites: it’s accessible, but the bathroom isn’t; or it’s accessible but it’s small, so the audience will have to stand. And then my publisher put us in touch with Mara Mills, co-founder and co-director of the NYU Center for Disability Studies, and all of a sudden our event was being hosted by the NYU Center for Disability Studies.

The reading at NYU was the most thoughtfully accessible event I’d ever been part of. It’s not that I hadn’t been around accessible events before; in 2016, I co-organized Sick Fest, a free Oakland event that featured readings and performances by sick and disabled artists and writers. We did our best to make Sick Fest accessible, but we were winging it: we had no budget and none of us had ever organized a large event before, accessible or not, so we had to educate ourselves about what accommodations to provide and then somehow figure out how to provide them for free. While we did manage to find a wheelchair accessible space and arrange for ASL interpretation and other accommodations, some of the logistics weren’t sorted out until the last minute.

But at the Center for Disability Studies, as you’d imagine, accessibility was built in. There was plenty of space for audience members in wheelchairs; a CART captioner typed our words as we spoke and they appeared on a big screen. I’d never seen CART captioning before, and I was a bit distracted by it, in part by the narcissistic pleasure of seeing my speech appear in big green letters and in part by the joy of seeing this accommodation provided for the first time. And it hadn’t even been something I had to ask for or fight for or scrounge up funds for. The Center for Disability Studies provided it because that’s how their events are. For them, it was routine; for me, it was utopian. What if all events were CART captioned? What if accessibility was a thing you didn’t have to wrangle? What if it was always built in, assumed, part of any space?

Three days later, in DC, I appeared in conversation with a memoirist whose publisher had arranged for our reading to be held at an independent bookstore. It was a great venue, except for one thing: the event space was down two flights of stairs. I have a couple of friends in the DC area, a fiction writer and a poet. The fiction writer came to the reading; the poet, who gets around on crutches, did not. As I walked down those stairs to the event, I thought about how they were keeping my friend out and I wondered who else they were keeping out. But once the reading started, the venue’s inaccessibility fell from my thoughts, replaced by nerves and excitement about the memoirist’s book. For the two or so hours we talked and answered questions from the audience, the fact that we were in an inaccessible space didn’t cross my mind.

Remembering my reading at the bookstore helps me understand how easy it is for most people not to think about accessibility. If you’re able bodied and go to events in lots of inaccessible spaces, you might think there’s no need to have your event in an accessible space because you don’t know any wheelchair users who like poetry or film or memoirs.

And thinking about my reading at the Center for Disability Studies helps me envision exactly how beautiful access is, how it brings people together, makes everyone welcome, includes everyone in the conversation. How access is an act of love, as Leah Lakshmi Piepzna-Samarasinha writes.

I don’t know what will happen when the pandemic is over. I can’t say I’m too optimistic about these gains in accessibility lasting any longer than able-bodied people need them, but maybe the future will prove me wrong. I don’t think we’ll have live streams of every reading and show, but I could see some arts organizations rethinking their online offerings. I do think this is a great time for everyone—including and especially (currently) able-bodied people—to be thinking and talking more about disability and access.

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Amy Berkowitz is the author of Tender Points, originally published by Timeless, Infinite Light in 2015 and rereleased by Nightboat Books in 2019. Other writing has appeared in publications including Bitch, McSweeney’s, and Jewish Currents. She lives in a rent-controlled apartment in San Francisco, where she’s writing a novel.

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Brevity‘s special issue on Experiences of Disability launches on September 15, 2020

 

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