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 30, 2020 § 5 Comments
By James Tate Hill
A few months after I turned sixteen, I lost my sight. Not all of it, but enough that I no longer recognized myself, in the mirror or otherwise. If I dedicated much of my energy to avoiding situations where I couldn’t pass for the ordinary teen I had been, my blurry peripheral vision often convinced people, sometimes even myself, that I was still him.
Actually, let’s try that again.
A few months after you turned sixteen, you lost your sight. Not all of it, but enough that you no longer recognized yourself, in the mirror or otherwise. If you dedicated much of your energy to avoiding situations where you couldn’t pass for the ordinary teen you had been, your blurry peripheral vision often convinced people, sometimes even yourself, that you were still him.
Deleting all those I’s is how it felt to disappear.
Your awareness of second-person point of view came in graduate school for creative writing. You read Bright Lights Big City during college, but having seen the movie, you simply imagined Michael J. Fox every time the novel said you. Now you were the fiction editor for your school’s literary journal, interrogating the choices writers made. When your co editor showed you a submission she liked, the story’s use of second person was the first thing you noticed. It called attention to itself, like neon shorts or a septum piercing.
Despite the gaudy point of view, you voted to accept the story. It was a moving, well-crafted narrative about a primatologist who accidentally eats a chimpanzee she had been studying. Or something like that. Seventeen years later, you don’t recall the plot, nor your co-editor’s argument that the point of view underscored the narrator’s confusion. You trusted her taste. You also didn’t listen closely, not thinking you’d ever abandon first or third person. Since losing your sight, you tried to call as little attention to yourself as possible.
Your next brush with second person came a dozen years later. You were reading House of Prayer No. 2, the memoir by short story and screenwriter Mark Richard. Recently you had published your first novel, a mystery featuring a blind protagonist. It was the first time your writing broached the topic of disability. How you went from hiding your blindness so diligently for fifteen years to writing about it, however thin the veil of fiction, is a question for another essay—a memoir, it turned out.
But you were talking about Mark Richard and House of Prayer No. 2. Growing up in the 1960s with deformed hips, Richard was labeled a “special child” and sent to a series of charity hospitals. In the memoir’s early pages, he refers to himself in third person as the special child. Returning home to the low expectations of parents and teachers, he shifts to second person for the book’s duration.
It made sense, now that you were writing about your blindness, why Richard didn’t refer to himself as I. The guise of fiction let you acknowledge parts of yourself you rarely had with friends or lovers. Experimenting with second person, shifting point of view felt at first like another costume. It proved to be a skimpy pronoun, however, nothing but a pair of glasses. It revealed far more than it hid.
The perceptions of others hover constantly above the disabled, casting long shadows. You are blind; you are deaf; you are the special child. You cannot do this; you cannot be this; you are, to the many who choose not to know you, invisible.
But in your writing, you are only you: author, narrator, protagonist. In second person, you are who you say you are, the only voice in your ears your own. Your failure to reconcile your disability with who you used to be, your mistrust of labels, the fear of judgment that led you to pass for sighted those many years, come into focus each time you type you.
When you met Mark Richard in graduate school, a visiting author to your writing program, he had recently undergone another in a lifetime of hip surgeries. He walked with canes, but when you recall your brief time in his presence you rarely think of his disability. Instead, you conjure the stories he told over burgers at Old Town Draught House. Once, on a globe-hopping quest to interview Tom Waits, the author found himself face to face not with the singer-songwriter, who kept eluding him, but a well-known adult film actress of yesteryear, missing her front teeth.
In his memoir, Richard’s picaresque search for Tom Waits is more intricate and less straightforward. In second person, there’s another layer to the story. He’s telling it to himself as well as the reader. For two months, he rides trains across Europe, often lost, the journey its own destination.
When you think of Mark Richard, you remember, too, how quickly the visiting author dissected your short story during the afternoon workshop. “Is this a story or a sketch?” he asked your classmates.
“Sketch,” someone said.
Plucking a single line from the story you had turned in, Mark Richard crafted new dialogue for your characters on the spot. Instantly they came alive. You were startled by how much better his sentences were than yours, how much of the story you had not seen.
James Tate Hill is the author of a memoir, Blind Man’s Bluff, coming summer 2021 from W.W. Norton. His debut novel, Academy Gothic, won the Nilsen Prize for a First Novel. He is the fiction editor for the literary journal Monkeybicycle and a contributing editor for Lit Hub, where he writes a monthly audiobooks column.
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 29, 2020 § 4 Comments
By Adam Hubrig
Under a thin cotton sheet, my face is illuminated by the dull glow of my smartphone. It’s 11:57 pm on a Thursday night during a global pandemic. I can see another midnight writing deadline come and go unfinished and I feel trapped in a cycle of doomscrolling on Twitter. Yet another day has passed and I’ve nothing to show for it.
I don’t know if I’m comforted or depressed to know I’m not alone: My email inbox is saturated with a particular genre of email I’m calling the “sorry, I’m exhausted” message. This genre, largely from my beloved circle of disabled friends, expresses guilt that they have been unable to write, that we often do not submit writing to our online group when we had planned. Even amidst a global pandemic and an economic crash that has unequally harmed disabled people and particularly multiply marginalized disabled people, we feel guilty for not writing.
Like my disabled friends, I want to write. I sorely want to write.
But I’m overwhelmed by uncertainty, which was already staggering before the pandemic. Already precarious access to mental health resources has been further strained. Like many disabled people, I am being asked to put off medical procedures because of the demand on medical resources caused by Covid.
It’s clear–in this time of upheaval–I simply cannot produce at the same rate. Of course, our worth has nothing to do with what or how much we produce. As Shayda Kafai reminds us, “productivity is how our capitalist-ableist culture regulates us, makes us feel less than.” Still, as disabled writers, it’s so easy to feel guilt for not responding to every opportunity, for taking a day off (or weeks or however long you need) from writing without feeling guilty. I know my own feelings of guilt are often manifestations of internalized ableism.
In my own efforts to combat this ableism, I keep trying to remind myself that pandemic time is crip time.
Understanding crip time has been extraordinarily helpful to me in my own efforts to be kinder to myself and my writing habits. Alison Kafer describes in her book Feminist, Queer, Crip as an interruption of the paradigm of time. Crip time resists the notion that time is experienced that same way by different people, that the timeline of how long any given task takes cannot be standard because our bodyminds are not standard. Instead of forcing a bodymind to be “productive” by ableist, normative frameworks, crip time is a reminder that there are no universal standard timelines. And during a pandemic, we are constantly reminded that nothing is standard. Tasks like procuring groceries become logistical nightmares (or even more so, for many disabled folks), and social lives evaporate. Pandemic time is crip time.
But even understanding that we need to prioritize the needs of our bodyminds, it remains true that others will not understand. In her essay “Six Ways of Looking at Crip Time,” Ellen Samuels describes her own complicated relationship to crip time. Samuels describes how the disabled needs expressed through crip time are often not accepted by employers or publishers, how the arithmetic of working lives is often cruelly uninterested in our own needs. This seems amplified by calls to work remotely–or worse, the employers who seem indifferent to the pandemic and are forcing their workers to risk their health and safety to keep the coffers full.
And I get that–for many of us–we want to write more out of a love of writing. Writing can bring joy in itself, and we feel a sense of loss when we can’t. Those feelings are valid, too. Crip time–and disability pride for that matter–doesn’t mean you have to be happy about that loss. Leah Lakshmi Piepza-Samarasinha writes about caring for disabled bodyminds “that for most people, the words “care” and “pleasure” can’t even be in the same sentence. We’re all soaking in ableism’s hatred of bodies that have needs.” Despite the pervasive ableism, Piepzna-Samarasina insists that our needs should be present in the room without guilt.
The capitalistic push towards productivity asks us to ignore the very fact of our bodymind. As Christina Cedillo reminds us through her experiences as a disabled woman of color, this erasure of bodies “fosters institutional oppression.” As disabled writers, sometimes crip time means we can’t write or we need to turn out attention to other tasks tied to care that are more pressing in that moment. The number of pages we write and the time it takes to write them doesn’t dictate our “value” as a writer, and we are always more than what we produce.
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.
In conjunction with Brevity’s “Experiences of Disability” issue, I purposefully center disabled writing experiences here.
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.
September 28, 2020 § 3 Comments
By Sejal Shah
We are told to pitch companion essays in the months leading up to a book release. These essays are meant to accompany and contextualize your book–to connect them to something current. I wrote one in February, intended for June, imagining the book party for my debut collection of essays, This Is One Way to Dance, as a wedding do-over. I got married five years ago in June, in a stressful ceremony filled with film-worthy religious conflicts and interfering aunties who saw my wedding as a stage for their daughter’s and granddaughter’s minor roles. I was 42 when I got married and disgusted by the stage mother behavior. My future husband and I dealt with their aggressive demands and my in-laws’ trauma. My brother-in-law had died suddenly many years earlier. He had never married, and a major life event resurfaces loss.
I realized later that I had been manic in the weeks before the wedding, but there wasn’t space for me to be sick. My grandmother, with whom I lived, had suffered a stroke six months before. My aunt had also moved in with us while undergoing cancer treatment. My mother told me later, we thought you were fine. You were smiling.
As someone with late-diagnosed and crushing ADHD, managing my book launch and promotion in a pandemic was brutal. I have written about neurodiversity and invisible disability, but in my experience, people don’t understand adult ADHD. In higher education, I had learned it was better to perform wellness than disclose a deficiency. We are a capitalist society, interested only in numbers, productivity, bottom line. I had put so many years and time and energy and myself into this book. I hired a publicist. She took a hefty deposit, stopped returning emails, and disappeared.
What I had going for me was my husband, and health insurance through him. I was not teaching in the spring, so I did as much as I could to prepare for my book release. I figured the book could be a happier, easier party. I figured wrong.
There was so much I didn’t know. I didn’t know my father would be diagnosed with a fast-growing blood cancer, or that a global pandemic was headed our way. I didn’t know about sheltering in place.
I didn’t know about the deaths of Breonna Taylor, Ahmaud Arbery, and George Floyd, sparking mass protests and a social media blackout the day of my virtual launch. In the months before my book’s publication, my father went through chemo, ending up in the hospital and rehab–a nightmare.
COVID-19 canceled the writing conferences I would have presented at and my planned book events. All travel: no. My husband taught middle school history from our dining room table. I was a zombie walking from the kitchen back upstairs to my desk.
My mother also has, I suspect, ADHD. My uncle helped her correctly fill out and file the forms for the long-term care insurance my father had. Even if you have insurance, they don’t make it easy. And when you have the stress of being the primary caregiver, who has the extra bandwidth to do even that?
In my recent reading list for Electric Literature, I wrote about books by women of color that helped me reclaim my voice and write about mental health. This reading list and an essay on invisible disability and neurodiversity I published last year both are my most important companion essays for this book.
I began with Audre Lorde, whose powerful essay “The Transformation of Silence into Language and Action” has been a touchstone for me since I first encountered it in college. I included books by bell hooks, Claudia Rankine, Abeer Hoque, Leah Lakshmi Piepzna-Samarasinha, Esmé Weijun Wang, Yiyun Li, Mia Birdsong, and Cathy Park Hong: I wanted to make visible these Black and Asian American writers whose books have shown me alternative ways to think and write about voice, microaggressions, misogyny, disability justice, third cultures, mental health, academia, medical racism, and community.
As has become clear in 2020, it’s the President, Republicans, corporations and much of our culture who are sick. Rotten at the root. Not the Black and Brown people suffering under unequal access to health care. I mean, we may be sick and/or disabled, but we are not insane nor are we cruel. That’s our government and the limitations of a for-profit health care system.
My virtual book launch was like my wedding: it was an event that was eclipsed by events larger than, outside of, and more pressing the book itself. A wedding is not a marriage. A virtual book launch is not the life or journey a book will have.
My book has had many friends and supporters, visible and invisible, and who reminded me it’s a journey: there’s magic, there’s grief, there’s change, there’s the blank page. There’s the book, which has its own life beyond you. And writing? As Margaret Atwood says in her lyric essay “Nine Beginnings,” “You begin again. It never gets easier.” You give yourself over to the page.
I have learned there are no do-overs. Managing my invisible disabilities: depression, neurodiversity, ADHD, and rheumatoid arthritis are lifelong tasks. I’m a good performer and reader, with a long background in dance. I do smile a lot, but it’s not my only expression.
Making a book and letting it go is an invisible call and response in ways that have surprised me. This is One Way to Dance has felt most real when I read letters and emails from friends, classmates, former teachers, and strangers. This is when I see my book sallying forth, making its way in the world without me.
Sejal Shah is the author of the debut essay collection, This Is One Way to Dance. Her stories and essays have appeared in Brevity, Conjunctions, Guernica, the Kenyon Review Online, Literary Hub, Longreads, and The Rumpus. The recipient of a 2018 New York Foundation for the Arts (NYFA) fellowship in fiction, Sejal recently completed a story collection and is at work on a memoir about mental health. She serves on the faculty of the Rainier Writing Workshop low-residency MFA at Pacific Lutheran University and lives in Rochester, New York.
author photo by Preston Merchant
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 25, 2020 § 4 Comments
by Ilana Masad
The arhythmic staccato of fingers typing fast and fluid on a keyboard has been one of the most comforting and consistent soundtracks of my life. I remember the satisfying clacks of my parents’ large mechanical keyboard, so loud the noise carried from the study all the way to my bedroom. Later, when my dad got an office job, I became intimately familiar with my mother’s typing, the short pauses that meant she was taking a drag off her cigarette, longer ones indicating she was focused on finding the right phrasing. Lately, when I visit her, I stay on the foldout bed in her office, and often read or take naps there while she’s working or answering emails, the familiar noise making me feel inexplicably, illogically safe.
Sometime in the late ‘90s, I had a computer game that taught touch-typing. I “played” it—to call such a dull educational program a game is potentially a misnomer—and gave up pretty quickly, only to try again a year or so later, and then again at some point. There was no good reason for me to learn this skill; my school rarely had us using computers, and it’s not as if I knew then that I would end up being a writer. I kept trying mostly out of envy: my best friend at the time, who was good at everything, had taught herself to, and my mother touch-typed, having learned on a typewriter years before.
I do touch-type now, having learned by trial and error and practice, but not the “right” way, the way that computer game wanted me to do it, using all five of my fingers in equal measure on each of my hands. I mostly use my forefingers, middle finger, very occasionally my ring fingers, and usually just my left thumb on the space bar. But I type fast, and—a fun party trick—I can look away from my screen entirely, at the window, say, or at my partner who’s walked into the room to tell me something, or at a friend sitting across from me at the library or coffee shop (back when we could gather to study and work together, that is), and keep typing out this full sentence without making even a single mistake.
Mirrors and I don’t always get along; they trouble me, or I them, and anyway, somewhere between the refraction of light on glass and silver and my brain processing the information given to my eyes, something is distorted. This is a symptom of my body dysmorphia, a condition that has stayed with me since whenever it developed during the long, messy years of an eating disorder I still cannot quite shake.
But my hands—I didn’t fall in love with them all at once, but bit by bit, as with a best friend who has always been there but who begins, one day, to seem appealing in a new way. It was in college that I first took notice of them, maybe because my friends kept complaining about how loudly I typed, and I wanted to see what I was doing to make so much more noise than they did. Or maybe, having a laptop for the first time, the screen and keyboard connected, my eyes were more naturally down to my hands’ movements.
Whatever the reason, I found myself enamored of my hands’ determined strength, noticing how my long, slender fingers moved with a spidery grace along the keys, the tendons on the backs of my hands arching up at unexpected moments. I became mesmerized with how my left thumb rested on its side when I was thinking, its knuckle a little swollen, and how the bony knob at the edge of my wrist seemed to shift ever so slightly when my middle finger tapped at the Backspace key. I even appreciated my translucent skin for once—normally I hate it, so see-through that vast expanses of me aren’t beige or pink but sickeningly reminiscent of hanging meat, squiggles of red, purple, and blue—and took pleasure in the three strong blue veins that disappeared between the knuckles of my right hand while, on my left, I could track one from the edge of my wrist, snaking up near my thumb, and disappearing into my pointer finger.
Three years ago, I started writing a novel, the seventh I completed, the fourth I sent to agents, the first that got picked up, sold, published. The editing process came amidst my fourth semester of graduate school and was so intense that I was left with immense pain in my right arm. I was diagnosed with tendinitis and have been doing physical therapy since—I tried cortisone shots, but once the second had no effect, I stopped—but fifteen months later, the pain hasn’t gone away. Dull or throbbing or lava hot or electrically searing, it lingers, and typing often and a lot makes it worse. I’ve tried braces, ice, heat, CBD cream, but ultimately, I likely need rest, the one thing I cannot get—I write for a living, after all.
I wish that were it, just (“just”) an acute work-related injury turning chronic due to overuse, but the truth is that my hands, the one area of my body I loved without reservation, have become sites of mourning. They’re changing shape, pinkies and pointer fingers crooking inward; pain flowering through the nerves and muscles for several days every month or so, often preceded by mornings when I wake up barely able to make a fist, hands stiff and weak. Whether early-onset osteoarthritis or seronegative rheumatoid arthritis—diagnosis pending due to pandemically postponed appointments—there’s not much to be done.
Which is worse? Depends on the day. I keep typing, hoping against hope that I will never need to stop, pushing through excruciating pain or ever-present discomfort, and try to take comfort in listening, at least, to the sounds of my fingers arrhythmically stacattoing their way through language.
Ilana Masad is a books and culture critic, host of The Other Stories podcast, and author of All My Mother’s Lovers.
Author photo by Joshua A. Redwine
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 24, 2020 § 12 Comments
By Ruth Osorio
Write. Every. Day.
Starting two years ago, this well-intentioned advice mocked me from my inbox on a weekly basis. The emails started in my first year on the tenure track as an assistant professor. Like all writers, academics can struggle to find time to write. Women, especially women of color, are often burdened with extra diversity and mentoring work, creating additional barriers to cordoning time to reflect, brainstorm, write and revise. So the tip to protect my time, to prioritize my writing should have been a welcome one.
But it wasn’t.
Because one morning when the email popped onto my screen, I was exhausted. My two young children had been up all night throwing up. On top of that, my head felt disconnected from my body, as if I was floating through a dream. I later learned that this is called brain fog, a common symptom of an underactive thyroid, a condition I would be diagnosed with months later. I didn’t write that day. Or the next. Between the fatigue and the brain fog, the advice to write every day didn’t feel empowering: instead, the advice just made me feel like a writerly failure.
I’ll go even further: the very advice designed to empower underrepresented writers to protect their writing time is grounded in ableist logics of productivity, normativity, and abled time. Writing every day may work for some, but for people with non-normative mindbodies and/or people who perform carework in their homes and families, writing every day is simply not possible. When that advice is framed as a mandate, the institutions and assumptions that prevent us from writing in the first place are left unchecked.
So often, we as writers—all writers, not just in academia—judge ourselves based on how many words we’ve written in a day or a week. We are taught to measure our productivity based on output. Within this model, a productive day might mean 1,000 words written or revisions to an essay submitted to a publisher. But productivity measures of writing are steeped in capitalist, and thus ableist, logic. Capitalism tells us that our worth as humans is based on what we produce and how much capital our contributions to society create. And as critical disability studies scholars tell us, when productivity is framed as a moral good, disabled people are further shunned from society, deemed unworthy because of their supposed lack of contributions to society.
Writing is not immune from capitalist logic. Disabled writers Esme Wang, Rachel Vorona Cote, and Gillian Giles, among many others, describe the shame internalized by disabled and neurodivergent folks who can’t produce consistently. We have to keep moving, keep writing, keep producing in order to have worth, multi-marginalized disabled people exponentially so. Whenever our disabilities, chronic illnesses, caregiving, or a variety of other life situations get in the way, we question our worth as not only writers but also people.
We need new models of writing, models that embrace different ways of moving, processing, and expressing. Fortunately, disabled writers offer crip models of writing to the world. I think of Audre Lorde describing the first time she wrote her name in class, how it was slanted because of her visual disability, letters sprawled across the page. Her description in Zami: A New Spelling of My Name prompts me to question the authority of lines on the page and reimagine how letters can move in space. I think of M. Remi Yergeau, an autistic writer who discusses stimming as a language act rich in meaning. I think of Ellen Forney’s graphic novel Marbles: Mania, Depression, Michelangelo, and Me, and her journey to embrace psychiatric medication as part of her artistic process. Neither Lorde, Yergeau, nor Forney present their writing approach as the universal, ultimate way to write. What they do show us is that we don’t have to separate disabled mindbodies and their diverse needs from the act of writing.
Does this mean we dispose of all writing advice, declaring it futile to offer any guidance since we all write so differently? I don’t think so. Writing is hard, and I am constantly seeking out advice for how to approach writing and revision, especially from neurodivergent and parenting writers (such as this golden advice by Captain Awkward about letting go of productivity during a global pandemic). Rather than disregard all writing advice, I want to see writing communities make space for more models of writing, so that disabled and/or caregiving writers don’t feel shame when their processes don’t align dominant expectations.
One way I have worked toward embracing my own writing process is reframing what even counts as writing. Reading other people’s works is writing, I tell myself. Going for a walk to tease apart a big mental roadblock is writing. Taking a nap so that I have the energy to write later is writing. Remembering to take my anxiety and thyroid medication so I can brainstorm is writing. When I think about all the acts I performed that sustain my writerly self as writing, I am able to let go of the shame of not being productive any given day.
And yet, this reframing doesn’t go far enough. Justifying self-care because it serves productivity ultimately maintains capitalist and ableist frameworks of creating. My next step, then, must be bigger, bolder, and harder: to reject the productivity mantra entirely. I am not a writer because I write a certain number of words every day. I am a writer because I use story to reimagine worlds. My value as a writer, citizen, and human is not rooted in my productivity, I tell myself on those brain foggy, exhausted days in which small humans climb on my limbs with no mercy.
Because my job, and thus my livelihood, requires that I keep up with my writing, I can’t completely disregard time. I wish I could. But I can automatically forward those weekly reminders to write every day to my trash folder. And I can use the time I would have spent reading those emails to instead plot my next nap.
Ruth Osorio is an Assistant Professor of Women’s Studies and Rhetoric at Old Dominion University. She has published academic articles, but her most meaningful writing has been access advocacy within her university and her profession. She is also a community organizer, a mom of two young kids, a wannabe yogi, a novice baker, and a lover of veggie burritos.