October 26, 2020 § 2 Comments
By Debra Wilson Frank
When my husband died suddenly at forty-four of an undetected genetic heart defect, I was bereft. Entering the funeral home’s side entrance, I felt myself separate from my body and perch above the door where I could view the whole room, including myself, walking to the front row, dressed in black, blond and thin, ten pounds gone in ten days.
Natasha Trethewey experienced disassociation too, as she stepped through her mother’s apartment door the day after her stepfather, “Big Joe,” a troubled Vietnam vet, murdered her mother. As she writes in her memoir, Memorial Drive: A Daughter’s Memoir, she “felt as though I were watching someone else….”
The thresholds of the funeral home for me, and her mother’s apartment for Trethewey, were metaphoric entrances into lives changed forever—into new versions of ourselves. Trethewey, then a college student, responded with “willed amnesia” and decided to leave Atlanta for good, her memories locked away in “mute avoidance of the past,” while I was midstream in my life, with young children, and found myself revisiting my long-avoided past. My stepfather wasn’t a murderer, but he ruled my mother, who handed over the grocery money for his drugs, and her daughters (I was twelve and my sister, sixteen) for his other appetites. When I escaped into the safety of my father’s home after nearly a year, I put the experience under my mental floorboards. I even stopped writing, something I’d always done as a kid, to ensure nothing seeped out.
When Trethewey moved back to Atlanta three decades after the murder, she found reminders of her mother’s life and death everywhere and realized she needed to face her past. The result is an exquisitely-crafted memoir that reflects her poetic gifts. Trethewey served two terms as United States poet laureate (2012 and 2013), and her collection, Native Guard, won the 2007 Pulitzer Prize for poetry.
The book is structured with remarkable symmetry—the opening and closing so well matched, I thought of a palindrome. Trethewey begins with a quote from John Banville in The Sea, “The past beats inside me like a second heart,” and closes with a scene in which her mother (Gwen) allows fifteen-year-old Tasha to take the wheel during a road trip—a prelude to learning to drive—and the author feels her mother’s heart beating so close to her own, it’s as if she has not one, but two hearts. It’s an elegant and touching way for the author to express her love for her mother. The memoir starts and ends with that love.
The bookend of hearts brackets a second set of bookends—a dream Trethewey describes at the beginning and again at the end of the book. Three weeks after her mother’s murder, Trethewey dreams the two are walking around a track, her mother with a bullet hole in her forehead. “Do you know what it’s like to have a wound that doesn’t heal?” Gwen asks.
The dream conflates the murder with a real incident that happens just after Gwen goes to a women’s shelter to escape Big Joe. At a high school football game, Tasha is standing on the track with the other cheerleaders when she sees Big Joe enter the stadium. On a hunch, she smiles and waves at him. Later she learns he’d come to kill her—to punish Gwen. Tasha’s kindness changed his mind. The dream acknowledges what Trethewey resists. If Big Joe had killed her, he would have been locked up, and her mother’s life would have been spared. When Trethewey revisits the dream at the end of the book, she recognizes her own wound that won’t heal—her survivor’s guilt.
Within this frame, Trethewey tells her story, mining her memories for the metaphors that help her make sense of the trauma that haunts her.
In one poignant scene, after Gwen, newly divorced, and Tasha, then six, having moved to Atlanta, the girl watches her mother dress for her job as a cocktail waitress in Underground Atlanta and notices the daffodils she’d picked earlier that day on the dresser. Gwen’s costume includes a belt made of bullets. Looking back, Trethewey wonders if maybe it’s the night her mother meets Big Joe. “. . . her body ringed in the objects of her undoing.” She goes deeper with the metaphor, evoking the myth of Persephone, who is lured by yellow narcissi to her doom in the underworld. Has Trethewey as a little girl supplied the flowers that lead to her mother’s destruction? Survival guilt reaches across time to make it seem that way.
Later, now married to Big Joe, her mother celebrates completing her graduate degree with a party. In a memorable moment, the crowd parts, Soul Train style, and Gwen dances between them. Trethewey recalls that image with another nine years later when mourners part for her mother’s casket to pass between them on its way to the hearse.
Trethewey uses this pattern dramatically in her scenes throughout the memoir, connecting different moments in time, so she doesn’t just narrate events, she embeds her reflection in them.
At the end of the book, when Trethewey revisits the “wound” dream, she writes, “This is how the past fits into the narrative of our lives, gives meaning and purpose…. It’s the story I tell myself to survive.”
As Trethewey did, I had to exhume my past to make sense of my life. The trauma of losing my husband was a second abandonment that plunged me back to the first—and like a toggle switch, I started writing again. I discovered a tougher kid than I remembered, a younger me who might show me how to weather an even worse blow. A story that could show me how to survive.
Debra Wilson Frank holds an MFA from Vermont College of Fine Arts. She has published in The Rumpus and her work will be included in the anthology, Being Home to be published by Madville Press, in September, 2021. She is writing a memoir about early widowhood and her traumatic childhood. Debra lives in Salt Lake City with her partner and her two adult children.
October 9, 2020 § 3 Comments
By Cara Siera
I’ve heard it said that every middle-grade girl has a “horse phase.” Whether that generality is true or not, I know that I certainly did. I grew up on five acres in the rolling hills of Tennessee. My dressing table was covered in model horses, my bookshelf full of titles like The Black Stallion. At fourteen I learned how to work, mucking stalls and tending horses and sheep on a neighboring farm. Often, I was up before daybreak to complete my chores before school or out at the barn in the middle of the night, having come home late from weeknight religious services.
One afternoon, my equestrian employer asked me to pay her a visit outside of my normal working hours, and portentously commanded, “Bring your walking shoes.” We trekked across the pasture, over a grassy knoll that gave way to a deep valley.
There, alongside Cocoa, the brown quarter horse mare, stood a knobby-kneed foal. “She’s yours,” my employer crooned.
It’s that type of speechless elation that drives 13,712: A Journey. In his debut work, J.D. Massey provides a warm and intimate invitation, in a rambling rural style, to witness some of life’s wonders: the birth of a foal, new heads of grain emerging from the soil, and taking into his arms a long-awaited son.
But, alas, these moments of ecstasy are but commas amid life’s sentences. The journey, despite its joys, is rife with tragic human challenges—the death of a parent, debilitating mental illness, a first love suffering from addiction, family strife, an unwanted abortion, the inability to conceive a child, and the long road to successful in vitro fertilization.
These latter aspects distinguish 13,712 as offering unique insights. In 2019, one BBC news article described the perspective of would-be fathers as “a voice rarely heard among the passionate multitudes in the U.S. abortion debate.”
But the presentation in 13,712 would hardly register as debate in the general sense of the word. Never do the pages seem to brashly declare that the reader must take one position or the other. Rather, it is as if the author is saying, “This is what happened, and this is how it made me feel. Make your own moral judgment.”
13,712: A Journey is deeply, yet subtly, grounded in time and place. Mentions of events like the death of Elvis Presley, the release of a classic Gordon Lightfoot ballad, or a 60 Minutes television interview with abortion provider Dr. Susan Wicklund anchor the narrative, linking it to the reader’s own experiences. Where were you when 9/11 happened? That’s the kind of flashbulb memory we can all relate to.
And, although I wish to leave you to experience the surprise of it, a summary of 13,712: A Journey would not be complete without a mention of its vacant pages. These empty pages do not occur at the book’s frontmatter or backmatter, nor are they a printing error. Rather, it is an invitation.
Even when a nonfiction writer is willing to lay bare his or her soul in bitter ink and brittle paper, some words are just too painful to pen. Yet the author told me via email, “It struck me yesterday that there will be people, none of whom I will ever meet, that will use those blank pages to write their own story or at the very least fill it in with their own thoughts.”
Perhaps the most intriguing aspect is that the story continues. The book’s cover image is an actual snapshot of a farmer-father watching his ten-year-old son follow in his footsteps, making his first solo round on the combine. His joy at this momentous event was tempered by the reality that the beautiful-looking crop itself had been irreparably damaged by weather and that its value was depleted by half.
That setback gave Massey the final push to pen and publish 13,712: A Journey. Massey chose a print on demand publishing option rather than waiting on the mercurial moods of the traditional publishing house. Why? It is an attempt to save the beloved farm he writes about. American farmers have seen a number of lean years. Since the book was published in February of this year, 2020 has further burdened the agricultural breadbasket with economic downturn due to the COVID-19 pandemic and devastating weather events.
So, Massey writes on. His forthcoming collection of short stories, entitled Daddy, Tell Us a Story, is set for publication later in 2020.
Cara Siera is a freelance writer and photographer. She is the author of Life Is Stranger at Worthington High and Captivated. Her work has appeared in The Red Mud Review, Fearsome Critters: A Millennial Arts Journal, and elsewhere.
October 5, 2020 § 1 Comment
By Natalie Johansen
I know I am not alone in noticing recent trends toward divisiveness as we move further from the ideals of civil discourse. It’s disheartening how often conversations with my family and friends, no matter how innocently begun, end in tension. When I picked up Patrick Madden’s recent essay collection, Disparates, however, I found an immense reprieve from rigidity. Madden’s essays offer relief—they offer laughter, provoke pondering, and delight in playfulness. In his collection, Madden posits questions and complications but doesn’t feel obligated to provide all the answers. He holds with Montaigne’s philosophy: “I do not understand; I pause; I examine.” These essays tend toward reflection and sly away from polarization, which is, in part, what makes the collection so refreshing.
Madden’s collection begins with a preface that offers two dictionary entries for “disparate.” In one sense, “disparate” refers to things that are incongruous or miscellaneous—pieces that don’t neatly fit together. Madden applies this definition to essay collections generally, writing that collections are usually disparate pieces held together by theme or style; by titling his own word Disparates, however, Madden tells the reader not to expect a common thread running throughout his collection: “…what follows herein is unavoidably disparate, whether by design or failure or authorial inability to meet the market’s demands.” Even though I read the collection in order (it’s the predictable rule follower in me), I imagine that the essays within could be read in any order without losing anything essential. In that sense, it’s kind of like a musical album; of course, I imagine artists spend time agonizing over the sequence of songs on a record, but how often does the reader obey that order? The title of Madden’s table of contents (correction: one of his tables of contents) supports this idea: “CONTENTS (MAY HAVE SHIFTED).”
The range of ideas explored in this collection support that sense of disparity. Madden cartwheels from meditating on inertia to mixing proverbs to creating a period-accurate Montaigne costume (the last one might be useful for students who ever wonder what professors do in their free time). As is true of his first two essay collections, readers are as likely to encounter quotations from classical essayists as they are to encounter lyrics from classic rock.
Despite the fact that his love of the classical essay is ever apparent, several works in the collection borrow forms that would be foreign to Madden’s literary forebearers. The first essay in the collection, “Writer Michael Martone’s Leftover Water” is an eBay listing for a partially consumed Dasani water bottle from a Michael Martone reading. Madden describes Martone’s habit of finishing leftover water from the readings that he hosts, so the lucky buyer would have the opportunity to imbibe the literary backwash from a herd of talented authors. Elsewhere in the collection, he creates an essay by feeding his first two collections into computer software that generates a predictive keyboard based on his previous work. One of my favorite form essays in the collection is “Repast,” a word search essay that doubles as a touching tribute to his mother. These form essays create playful tone that runs throughout the collection.
On that note, I return to the definitions of “disparate” Madden offers to preface his collection. For the second sense of the word, he draws on the Spanish language: “1. noun Absurdity, inanity, frivolity; nonsense, claptrap, rubbish; balderdash, malarkey, drivel.” What follows this definition is a meditation on the idea of disparate as folly; he points out that although this sense of the word is often derogative, his purpose is to reclaim the beauty of nonsense and frivolity as Madden “reassert[s] the value of the disparate, which controverts reason, which shakes our certainties, which lightens our burdens, which alleviates our sorrows and brings us to laughter…”
In this collection, some essays take on the task of frivolity in obvious ways, while others carry more emotional weight; all are allergic to conflict and polarity. Disparates delights in the world and celebrates the essay. It was a joy to read.
Natalie Johansen teaches writing at Southern Utah University. Her work has appeared in Prick of the Spindle, Eunoia Review, Segullah, and more.
September 30, 2020 § 1 Comment
By Jessie Male
As I write this, we are living in a world dominated by a virus. Conversations are centered on who is most susceptible and what are the long-term effects. Media outlets tout commentary on the war we are fighting and who will come to the frontlines. We avoid close quarters and eye others with suspicion, wondering what is permeating inside. In the worst-case scenarios, the virus attacks a whole family. Grief can come in so many layers it is difficult to locate the core.
This is 2020. Yet it is also 1950. It is three years before my mother and aunt contract polio at the ages of five and eight. Throughout the United States, headlines inform families to be wary of swimming pools and to watch children closely. It is common to hear about isolation and quarantine. And in Sicily, Nadina LaSpina is only sixteen months old, a hearty and independent child, already walking on her own. Decades later, she writes: “I was never sick, never a fever until…until that fateful night when Crudele Poliomielite, Cruel Poliomyelitis, invaded our happy home and stole me from my family” (4).
Louise DeSalvo, memoirist, craft scholar, and my mentor, once said: “Memoirists are the collective memory of culture. This is why memoir is attacked. Culture trades in forgetfulness.” I return to this quote many times while reading LaSpina’s Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride. Throughout the memoir, LaSpina recalls the failures of the educational system to adapt to students with diverse physical needs, the many forms of stigmatization she experienced due to her use of braces and a wheelchair, and the enforced desire of cure or “normalcy.” As I read her work, I am struck by how it resonates, not only with my own mother’s experience with polio in the United States, but the current circumstances in which we exist. This is not the first time we’ve encountered a virus, and though there are certainly elements unique to the current moment, there is so much to be learned from the past.
Disability Studies scholar Tobin Siebers argued that the most successful forms of disability life writing utilize a “rhetoric of realism,” that reflects the complexity of disability. These are works that do not devolve into the overcoming narratives preferred by many in mainstream publishing, nor do they erase physical pain and grief. LaSpina has curated such a memoir, capturing her complex and shifting responses to her body and disability identity. Of becoming increasingly immersed in disability activism, she writes:
For years, I’d been—and indeed still was—terribly conflicted. I wanted to be around other disabled people, with whom I felt most comfortable, be part of our movement, and fight for our rights. At the same time, I wanted to be accepted in the nondisabled world; I didn’t want to be seen as different. (146).
This passage reflects the internalized ableism informed by an early life shaped by a father who desperately sought a cure or way to “fix” his daughter’s legs. Yet by the conclusion of the book, LaSpina narrates the tremendous pleasures she takes in her disabled community and activist groups. One of the several photographs included in the memoir capture LaSpina at a rally, her hair split down the middle, long dark hair blending into a winter coat, and holding a large protest sign. LaSpina recalls the evening of her first arrest, at an ADAPT protest, sitting in a jail cell and speaking “to each and every one of my strong comrades…shar[ing] stories of struggle and hopes for a better world” (237). Such moments solidify LaSpina as a leader amongst prominent disability advocates such as Judith Heumann and Laura Hershey. LaSpina adds: “The bond I developed with each one would last a lifetime” (237).
Like most successful memoirs about disability, Such a Pretty Girl complicates the narrative of “recovery.” LaSpina spends much of her early life trying to “pass” as nondisabled, using crutches and prosthetics to limit her use of a wheelchair. But by the 1980s, symptoms of post-polio begin to emerge, and a fellow activist tells her: “You need to stop walking and use your wheelchair. There’s only so much you can ask of your body” (157). With this, LaSpina navigates new frustrations, as well as new ways to move through the world, some of which provide greater ease. In this, LaSpina constructs a narrative of changing disability status, and documents shifts in the ways she gives and receive care.
When I teach courses in Disability Studies, many students identify an absence of disability history within previous coursework. Though most have heard of the ADA, they are unaware of all that went into and emerged from the law, as well as all that isn’t recognized by it. In this regard, Such a Pretty Girl takes on dual significance. It is not only a powerful memoir chronicling an individual woman’s immersion into disability culture and activism, but an important record of a vital and evolving rights movement.
Jessie Male is a nonfiction writer and PhD candidate in Disability Studies at The Ohio State University, though she resides in Brooklyn with her husband and rescue dog. She has an MFA in memoir from Hunter College and an MA in English from Ohio State. Jessie’s creative writing appears in Guernica, Bustle, Vol. 1 Brooklyn, BOMB Magazine, and other print and online publications. Jessie is a 2011 Edward Albee fellow, which supported work on her memoir Mirror Pain. She is currently on faculty at NYU Gallatin, where she teaches a fall seminar on Disability Art and Culture, and a spring seminar on Disability Memoir. You can reach her @ProfJMale and jessiemale.com
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 29, 2020 § 1 Comment
by Liv Mammone
In an interview with Lindy West, Samantha Irby stated that the working title for Wow, No Thank You was Dying Is Fine. The book has a picture of a very fluffy, floppy-eared rabbit on the cover while her original vision was a hissing possum. As someone who bought this book purely on the arched eyebrow I heard reading the title, I can’t overstate my fury at her publishers for not keeping either of those decisions. I think they better express both the book’s overarching emotional state and why it has quite literally kept me from emotional collapse during this year that seems like it is actively trying to destroy us all so we as a species will stop decimating everything in our path. Consider these lines from Irby’s opening essay, “Into the Gross.”
“I like to wake up naturally, gripped by a heart-pounding panic as the sun slices through my eyelids at noon, when it is perfectly aligned with my bedroom windows. I wince against the sun’s garish rays, a sick feeling spreading through me. It dawns on me that I have already wasted an entire day. AGAIN. I grimace loudly.”
In 2019 that was hyperbolic. This year? Many of us are right there. As someone with a chronic illness, I have been for several years. Even the notion of the body’s motions being loud is both a wry turn of phrase and a truism.
There are things I have in common with Samantha Irby and things I don’t. She can name each Real Housewife of New York. I want each of those women guillotined and their wealth redistributed. I love cartoon reruns for comfort. We come from different races and class backgrounds. We have different body types and traumas. I live with both parents while she lost both of hers young. But we both have shaved heads to control the dandruff that can get into our eyelashes. We both have depression and anxiety. We’re both bi. We both have boundless appreciation for 90’s music.
The difference I’m grateful for is while my disability has turned me into an overachieving self-punisher obsessed with external validation through hard work, Irby’s experiences of childhood neglect and of trying to speed date while wearing an adult diaper have made her “okay with just being okay.” When I read the sentence “I don’t do anything hard, because my life has already been hard” my outlook changed. I was staggered by the plain shamelessness of that statement.
Even two years ago, I would have been more than a little superior about Irby’s flat insistence that she’s “never related to someone whose main goal wasn’t just getting a table at a good restaurant and being able to pay for it.” I would have asked if elongated written memes like “Hello, 911?” where she details all her social horrors (“Hello, 911? I am unwittingly at the mall with my skinny rich friend and she insists that I follow her into Anthropologie […] Hello, 911? I have to cancel an appointment.”) and her honesty about loving “STUFF” like lipsticks and expensive soap were really saying anything. This would have been some serious privilege and self hating ableism on my part. Yes, she openly cops to her first book growing out of a blog she only started to have a shot with a guy who was dating a poet. If you’re looking for something about laughing so as not to cry in defiance of tragedy and oppression, something with metaphorical sad piano over it, keep moving. Even the details of Irby’s traumas are only referenced here. They have been spelled out in previous books. Though her subjects–food, bad dates, house sitting for rich people as a teenager, the culture shock of her white hippie wife and stepchildren, and her evil cat–have been mined in previous books, she is not interested in rehashing the hard past. The context around her writing has changed. Here’s how she herself describes her work, dishing on the experience of writing and pitching a pilot.
“How does this fit into a comedy, you ask? Honestly, I’m not 100 percent sure. I’ve managed to make a career out of LOL, I SHIT MY PANTS […] More important than that, even if it’s not knee-slapping funny, it would mean a lot to me to put chronic illness in people’s faces, especially the silent kind that you might not even know a person is struggling through. I bet if you met me on the street, you wouldn’t automatically think ‘sick,’ but if you looked at my last CT scans you would, and I want to represent for all my people taking twelve pills a day with bald joints and intestines lined with scar tissue.”
I expected “you wouldn’t think ‘sick’” to be more front and center in this collection because that’s what I’ve been taught to expect of life writing: the challenge, the fight, the resilience. It’s what I expect of myself. And yes, the author does speak to her diseases. But she would much rather talk about the Bachelorette. Rather than a harrowing piece about her diagnosis with Crohn’s, she tosses this image off.
“I’m not saying I haven’t explosive diarrhea while holding up my ill-fitting sequined skirt with both hands, party clutch full of valet stubs and coat check tickets clenched between my teeth, while a line of drunk party animals whine collectively because there’s only one stall.”
Sure, that’s funny. But it also is just the ins and outs truth of her life. Samantha Irby knows her worth beyond the borders of the page. So she has written a book, Wow, No Thank You, about the right to do only what you can. She offers microwavable recipes and admits she can’t eat nachos or live in a house. Not everyone will take her no-frills diction and rooted humor seriously–their loss. Under the fed up groan and flippant exhaustion, this is a book about stillness; about cutting ourselves some slack while still taking unexpected opportunities to be loved, heard, and full.
Liv Mammone is an editor and poet from Long Island, New York. Her poetry has appeared in wordgathering, monstering, Wicked Banshee, The Medical Journal of Australia, and others. In 2017, she competed team for Union Square Slam as the first disabled woman to be on a New York national poetry slam team and appeared in the play The Fall of All Atomic Angels as part of a festival that was named Best of Off Off Broadway by Time Out Magazine. She was also a finalist in the Capturing Fire National Poetry Slam in Washington DC. Her editorial job on Uma Dwivedi’s poetry collection They Called her Goddess; we Named her Girl, was nominated for a Write Bloody book award. She is also the editor of the speculative fiction series Margins and Murmurations by author and activist, Otter Lieffe. Currently, she works as an editor at Game Over Books and a reader for the literary magazine Anomaly.
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 28, 2020 § Leave a comment
By Lisa Erin Sanchez
Let us begin with beauty. “On a great day, in the light and under the gaze of a full-length mirror,” writes Brown, I know what’s beautiful about me and what I have to offer. On the bad days, I can appreciate what I knew to be true on the great days. I am a black woman with beautiful skin; the fingers on my right hand bend in interesting ways, and they are beautiful, too. Traveling farther down my fingers you will find faded scars on my last three fingers and one large scar in the space between my thumb and finger that took me longer to love. There is a black circle farther down my hand that I hate still, because my love is a work in progress” (143).
A year has come and gone since these words first appeared in the eponymous chapter of The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me, Keah Brown’s powerfully vulnerable essay collection about her thoughts and experiences as a black writer and activist with cerebral palsy. In that time, voicing self-love and body positivity has become an increasingly urgent and revolutionary act.
With the onset of coronavirus, many disabled people expected to find increased awareness outside disability communities. The fact that anyone could be exposed to a disabling and life-threatening illness might have provided a bridge of empathy to understand, for example, the pain and exhaustion Keah Brown expresses with humor and grace in chapter one, “Can We Sit for a Sec.” It could have provided a window into the careful maneuvers that those of us with immune conditions go through every day to avoid illness and other triggers.
But coronavirus has not made allies out of anyone who was not already an ally. More often, it has brought out a stingy, ugly side of humanity. What previously lie latent as silent judgments about our credibility or blameworthiness is readily voiced now in the form of demands for “vulnerable people” to stay inside, apparently indefinitely, so as not to interfere with other people’s precious freedom. Unlike able-bodied people who are sheltering-in-place, the implication is for disabled people to become ever more invisible and isolated, individually responsible for staying out of the path of the virus.
A glimpse of this type of microaggression, pre-COVID, is offered in chapter five of The Pretty One when a stranger approaches Brown with an offer to cure her through prayer. Notably, Brown was twelve at the time. Similarly, chapter seven illustrates the social media backlash Brown received when she called for disabled people to be included in beauty ads. “The tweet: Where are the disabled people in your beauty campaigns? The response: a flurry of tweets that called me everything from a crippled bitch to a Rihanna hater” (133). These stood out to me as our 2020 culture grapples with political divisiveness and increased disregard for the disabled and other vulnerable individuals. Indeed, as someone who has attempted to effect social responsibility in my right-leaning California community, I, too, have been subjected to trolling, harassment, and even stalking.
But Brown does not linger in this hostility. Her project is to illustrate the fullness of her humanity and by extension the full humanity of all disabled people. Today, as I write, she’s engaged in a new effort to highlight disability inclusion. In her New York Times article, “Disabled People Love Clothes Too” (July 26, 2020), she argues that fashion is a window to the soul and that accessible clothing needs to encompass style as well as function.
Using a similar pop culture lens in The Pretty One, a story about the everyday life of a young black disabled woman who is in love with music and film and love itself unfolds. This narrative seeks not to normalize disabled people of color but to challenge the tropes that leave us on the outside of the very songs and movies and communities we cherish. As Brown points out, “normal is a harmful idea that sustains itself by dictating rules of what should and should not be” (60). At the same time, even our joy can come at a price. In chapter four, the joy of discovering a disabled black woman represented in the Fantastic Four character, Alicia Masters, is tempered by disappointment that Masters is played by an able-bodied Kerry Washington and ambivalence about the urge to critique a film that features a popular black role model and broadens the horizons of cultural representation, if falling short on inclusion for disabled actors.
It is this complex interplay of race, gender, and disability that makes Brown’s The Pretty One so unique. In chapter three, “Is This Thing On,” she takes the language of disability to task. Having attended college in the early days of the Americans with Disabilities Act, I was interested to learn how millennials like Brown were navigating both the law and the language. Was there some new way to speak about ourselves, our desires, and our struggles that serves to counterbalance the challenges waged against the Americans with Disabilities Act and the people it’s meant to serve? I was pleasantly surprised to find that the preferred term for Brown remains the same: “I am a black disabled woman. I am not . . . any other iteration of disabled that says anything but the word disabled” (51).
While Brown rightly insists that the disabled community is not a monolithic group and each person must be empowered to choose her own identifiers, she views alternate terms like “differently abled” as an effort to make able-bodied people comfortable. “When I stopped caring about the comfort of able-bodied people with regard to the language used about my disability, I felt free for the first time in my life” (51).
To finish where we began, I am standing in front of the mirror in my bathroom. My left eye is swollen and half the size of my right. It hurts when I move it, which means I won’t be able to write as much as I’d like to today. But this is my job. Writing and being disabled is my unpaid profession, so I will write as long as I can stand it.
My swollen eye is one of the few visible symptoms of my medical condition, and it will go away in a couple weeks, while my body takes a break from attacking its own tissues or shifts to another organ. For my entire life I’ve called this symptom “droopy eye,” which is the name my family gave it, but the technical term is periorbital edema.
Periorbital edema hurts.
There are several other hurts that you would not be able to see if you looked at me today. The chest wall on my upper left side hurts, as does my stomach in the mid-section just below my liver, and the swollen lymph nodes behind my ears. These are all symptoms of my immune condition, which also causes prolonged high fevers at unpredictable intervals several times a year. In a bad year, I have fevers every month—just enough variation in the frequency to make me doubt my own reality.
At this time in my life, a Gen X woman with a millennial son who inherited my condition, I have learned to live with the pain and unpredictable nature of my disease (this is the word I use—like it or not, that’s what it is).
What I’m trying to learn from Keah Brown, who is the same age as my son, is to love my body as it is, with all its scars and pains. I am trying to learn that I don’t have to hide my rashes—they are beautiful red flower petals, raised and swollen, beaming heat and light.
I don’t have hide my C-section scar, the one that was created when my body refused to give birth while my fever raged at one hundred and five.
I no longer have to call the long scar on my knee a battle wound. This is my skin.
I will learn to love the marks on my body because they tell me who I am, they are a sign of the stubborn fevers and pains I have lived with every day of my life. I will learn to love them because my love, too, is a work in progress.
Lisa Erin Sanchez received her Ph.D. from UC Irvine and served as full time faculty in New York (UB), Chicago (UIC), and at UC San Diego where she had a joint appointment in Ethnic Studies and Critical Gender Studies. Her short stories, reviews, and essays appear in Los Angeles Review of Books, The Millions, The Rumpus, Wrath-Bearing Tree, and Porter Gulch Review. Her scholarly nonfiction is widely published. She is mom to one immune-disabled son who shares her genetic condition, which she has written about in her second novel, a near-future work of speculative fiction. She can be found at www.lisaerinsanchez.com and on instagram @lisaerinsanchez where she posts about books, science, and nature.
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 25, 2020 § 4 Comments
By Allison Wallis
David Chang’s memoir Eat a Peach is a book about disability, but it is not a disability memoir. A disability memoir, in my opinion, requires that an author be aware that he is disabled. I found myself continually wishing that someone would step in to tell the author that a community of people with bipolar and mental health disabilities exists and an even larger community of disabled people.
This vital missing piece loomed large throughout the book.
Chang recounts growing up with perfectionist parents, and the pressure his father put on him to become a young golf phenom. Chang lost his edge at golf when he hit puberty and his body changed. The author’s lifelong attempts to please his father are an undercurrent that runs through the book
I graduated from the Culinary Institute of America a few years after Chang finished culinary school. Many of my friends at school would take the train into New York City on the weekend to eat at Chang’s restaurant Momofuku. I never joined them, because Chang’s reputation preceded him. As a mostly vegetarian, I was not going to spend the small amount of cash I had at a place with a motto of “Fuck Vegetarians.”
I worked in restaurants for the same reason Chang did. We both had a background in finance. I was looking for a community and needed an outlet for my creative side. That community, however, was only there for me when I was healthy. As my disability progressed but before my diagnosis, I started missing work. Once I became dizzy and grazed my cheek on a hot sheet pan. Another night towards the end of a double shift I fainted and knocked my head against the Hobart mixer bowl. I was not given compassion; instead, I was threatened with termination. The restaurant industry widely welcomes people with mental health disabilities. It shuns the physically disabled and chronically ill.
I know of two people who use wheelchairs and work in restaurants. I know of no one who uses a cane or braces, or who has a chronic illness. I’ve never seen data, but I’d imagine the numbers of people who claim physical disability or chronic illness and have restaurant careers are infinitesimally small.
I wasn’t dealing with substance abuse and bipolar like Chang. Restaurants provided temporary refuge and escape from my quickly disintegrating body and the after-effects of a rough childhood, but in the long term, that work made my problems worse.
I finally found the community I was looking for after I left restaurants for good.
Chang recounts confusion in describing his therapist, who withheld his official diagnosis for years, only recently confirming it. As someone who was misdiagnosed for years, I can empathize with the feelings he may have been experiencing: the nagging sensation that there was something that needed to be uncovered about yourself. How would Chang’s working life have been different with a diagnosis? Would his new self-awareness have tempered his legendary rage and the guilt that followed? Would he have had better relationships with his employees and customers?
Chang’s account of sexism in the restaurant industry raised some doubts for me, as I find it highly improbable that any man who has run a professional kitchen could have been unaware of the rampant, industry-wide sexism and abuse.
He recounts multiple instances of behaving in an abusive manner toward his employees, including describing how “the slightest error or show of carelessness from a cook could turn me into a convulsing, raging mass. The only thing that could snap me out of my fits was punching a wall or a steel countertop.”
The book is chock-full of Chang screaming at and berating his employees, of outbursts of physical anger. Yet, when describing his role as a male chef, he writes, “I pride myself on my empathetic abilities, especially when it comes to other cooks and chefs.” He writes, “The distress of being ostracized and derided as an Asian American had tortured and motivated me for much of my career, and yet I hadn’t connected my own struggles to the way women of all ethnicities were feeling in the workplace.” Chang’s memoir relays a similar disconnect about the larger context when it comes to disability.
As I finished Eat a Peach I hoped that Chang might get an introduction to the disability community. He comes close to realizing the need for systemic change, recognizing that, “The mental and physical toll of working in restaurants is corrosive. It will take generations to undo the harm and build an industry that is equitable for all people of all genders, races, ethnicities, sexualities and beliefs. We need to be responsible for one another.”
I last worked in a restaurant kitchen in 2006, and afterward I spent a very long time grieving the loss of that life. The hardest part of that grieving was coming to terms with how I allowed myself to be treated: the pats on the ass, the too-close encounter in the walk-in, the constant sexual jokes, the having to work twice as hard as any of the men in order to prove myself. I destroyed my body in the process. I wish I could visit seventeen-year-old Allison. I wish I could help her realize her worth.
Allison Wallis is a writer and disability rights advocate. She lives in Hawai’i with her family and writes about life with rare medical conditions and disability.
September 24, 2020 § Leave a comment
By Paul Pedroza
Those who live with mental illness are familiar with their own unique “aha” moments, those events, dialogues, reactions, or observations served up by others, whether you’re open to them or not, that make you wonder about yourself and the ways you interact with and fit into your world. For many, what follows is a tortuous, often torturous, path towards diagnosis, treatment, and recovery. Individuals place their trust in professionals in a soft science, one in which guesswork comes with the territory and one that relies upon self-reporting, family history, and the client’s actions and experiences in order to provide help, whether psychological or pharmaceutical or both.
Sawchyn’s path into the mental health care system began abruptly after an episode in which the author seems to experience an episode of derealization, rocking and hugging herself and possibly lashing out at her mother who, in her words, was an easy target because she offered nothing but love. There is much possibility here, in the sense that memory can be faulty and unreliable, but Sawchyn perseveres from the start in “An Apology” all the way through the rest of this essay collection. She’s hospitalized. She has a history of cutting, a specific manifestation of non-suicidal self-injury, a symptom common in certain personality disorders such as borderline personality disorder, or as the author herself notes, a diagnosis all its own.
After a stint in a state hospital, a place where she felt “like being reduced to dust” (“Wellness Index”), Sawchyn receives her diagnosis— acute psychosis, bipolar I, manic episode— and her medications. The results splice into her core identity. “My identity was intertwined too tightly with a mental health diagnosis” (“An Apology”). She’ll spend the next seven years faithfully dosing herself with what she’s been prescribed and experimenting with other drugs, legal and otherwise. Before long, she’s left to her own devices and her meds when seeking counseling becomes too expensive. She drifts from trip to trip, meets a few men with struggles of their own (“Three Men,” a composite sketch of boyfriends who struggled through suicidal ideation and attempts), and ends up in the Midwest for graduate school. It is here where, with the help of counselors, she discovers her misdiagnosis. For seven long years, she lived a life shaded by bipolar I and all of its symptoms and stigmas, a life ordered and disordered by the medications prescribed to alleviate, to take the edge off.
Many of the essays in A Fish Growing Lungs detail Sawchyn’s struggles and triumphs with processing the misdiagnosis, overcoming withdrawal from medications for bipolar I, and further navigating the recovery process post-reveal. A few questions remain, most of all the question of a probable differential diagnosis— if not bipolar I, then given the symptoms and histories, the cutting, anxiety, her depression and her family’s history of it, the obsessive thoughts about health and safety, then what could it be? The latter few essays offer much hope, but little in terms of demystifying her adjustment post-misdiagnosis, but perhaps this is matter for a future collection.
A Fish Growing Lungs is a dynamic debut that offers hope to readers and writers who are struggling to define and delineate their own lived experiences, and a collection that demystifies diagnosis, misdiagnosis, and the struggles attendant with recovery for those who wish to learn about mental illness and its persistent stigmas.
Paul Pedroza was born and raised in El Paso, Texas. He received his M.F.A. in Fiction from the University of Illinois at Urbana-Champaign. His story collection, The Dead Will Rise and Save Us, is available from Veliz Books. He has completed his first novel, and he is currently working on a second and on a collection of essays.
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.
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.
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.