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 16, 2020 § 3 Comments
In the introductory conversation around Brevity‘s special issue on the Experiences of Disability, Sonya Huber asks her fellow guest editors Keah Brown and Sarah Fawn Montgomery to discuss how disability shapes their writing process, including ways in which their disabilities can change and deepen what and how they write:
Sarah Fawn Montgomery: Of course disability impacts my writing by sometimes limiting when, if, or how much writing I can accomplish, but disability also deeply informs my craft. It is subject and structure, influencing everything from framing and pacing, to detail and syntax. Disability has also shifted my writing practice. I know that I might not always be well enough to write, so I take advantage of any opportunities and am grateful rather than critical of the work I produce during this time. I recognize that long stretches of writing time are not always possible and have learned to write in short spurts and in unexpected locations. Sometimes I write daily, but many times I do not, and I do not feel guilty for taking time away to care for my body and brain. I understand this as another kind of writing practice, because caring for ourselves away from the writing eventually allows us to put words on the page.
Keah Brown: Disability impacts and shapes every aspect of my life. I am not just my disability but it is the lens through which I navigate the world. The writing process is no different. Earlier on in my career, I felt beholden to discuss disability, and that left me resentful, but as I have matured and grown, both as a person and professionally, I have realized that disability is a part of the nuance I bring to my work. The lens of disability has allowed me to get creative on the days my body won’t allow me to work at all. Shaping the way I approach work, disability is at the center of my work particularly in holding myself and others accountable, as well as giving me the opportunity to be assertive in what I need in order to create and when I need to say no. The truth is this: disability does shape my writing process from beginning to end in precious and obvious ways, but more important than words on the page, is the ability to shape me as a person. I am such a cliché, friends!
You can read the full discussion here.
September 15, 2020 § 2 Comments
The “Experiences of Disability” issue is guest edited by Keah Brown, Sonya Huber, and Sarah Fawn Montgomery. Artwork by Jill Khoury.
September 18, 2019 § 27 Comments
Brevity is excited to announce an upcoming special issue, “Experiences of Disability,” to be published in September 2020 and featuring anchor author Esmé Weijun Wang. The submission period will begin on October 1, 2019.
We invite brief nonfiction submissions that consider all aspects of illness and disability: what it is, what it means, how our understanding of disability is changing. We want essays that explore how disability is learned during childhood, lived over the entire course of a life, and how our changing understanding of disability shapes the way we experience ourselves and others. We are looking for flash essays (750 words or fewer) that explore the lived experience of illness and disability, as well as encounters with ableism, and that show readers a new way to understand the familiar or give voice to underrepresented experiences.
The “Experiences of Disability” issue will be guest edited by Keah Brown, Sonya Huber, and Sarah Fawn Montgomery. Brown is a journalist and author of the essay collection The Pretty One: On Life, Pop Culture & Other Reasons To Fall In Love With Me. Huber is the author of five books, including the essay collection Pain Woman Takes Your Keys and Other Essays from a Nervous System. Montgomery is the author of the recent memoir Quite Mad: An American Pharma Memoir.
Our anchor author, Esmé Weijun Wang, is a novelist and essayist. She is the author of the New York Times-bestselling essay collection, The Collected Schizophrenias (2019), for which she won the Graywolf Nonfiction Prize. Her debut novel, The Border of Paradise, was called a Best Book of 2016 by NPR. She was named by Granta as one of the “Best of Young American Novelists” in 2017 and won the Whiting Award in 2018.
Submissions will be accepted through Brevity’s Submittable page starting on October 1st.Those for whom Submittable is not accessible or for whom the reading fee of $3 would be prohibitive can email their submissions to firstname.lastname@example.org with the subject formatted as SUBMISSION: (Title) by (Name).
Editors gladly accept donations on the GoFundMe for the Experiences of Disability issue, which has a $1,800 goal for the special Brevity issue. This will pay authors and provide honoraria for anchor authors. Any additional money above this amount will be contributed to Brevity, to help with web-hosting fees and other ongoing expenses.
October 22, 2018 § 2 Comments
By Debbie Hagan
At three years old, Sandra Gail Lambert lay in a windowless room, in a plaster cast that covered her from chest to knees, healing from polio surgeries. Her mother would see her only one hour a day. The rest of the time, Lambert did nothing but listen to ambient noises and try to identify their varying sources. This left Lambert claustrophobic and determined never to be trapped again and to make the most of her abilities.
From cast to braces to crutches to manual wheelchair to power wheelchair, Lambert moves on becoming a nature lover, kayaker, photographer, and adventurer plunging headlong into rapids. In these beautiful, linked essays titled A Certain Loneliness (part of the University of Nebraska Press’s American Lives Series, edited by Tobias Wolff), Lambert portrays her life as one that rails against limitations and pushes steadily toward confidence and freedom.
She finds joy in a tight group of women friends, so enmeshed, “We can open the door to each other’s houses and yell a hello,” she writes. “Or we rush over in the middle of the night to be there, make coffee, or cry after bad news…. Sometimes we sneak in a dozen cupcakes, chocolate filled with cream cheese frosting, and leave them on the counter just because.” These are pure friendships without “qualifiers.”
The challenge comes when a new friend enters their circle. Sometimes the friend builds a ramp to her house; sometimes, she doesn’t. If the latter happens, Lambert knows “it’s going to go bad.” Without a bridge, she will never be able to leave surprise cupcakes and ultimately, “I will have to break up with her in my heart.”
The power wheelchair offers Lambert mobility, and yet it creates its own barriers. For instance, she’s about a head lower than everyone else. So, friends must remember to look down; otherwise, she will be left out of the conversations, handshakes, and the hugs she craves. Lambert creates some math to calculate potential opportunities for physical touch. For instance, if she’s going to a friend’s house, she can count on a hello hug. That’s worth about five seconds of contact. Three more hugs, pushes it up to twenty seconds. However, if she swings her body out of her wheelchair and onto the couch, she’ll rub shoulders and thighs on both sides with friends for two hours. That’s 7,200 seconds of touching.
It’s in the streams and woods Lambert finds real freedom. Getting in and out of the wheelchair and into her kayak, launching it, and then reversing the process requires complex maneuvers and calculated risks.
Alone in the Okefenokee Swamp, she sees snakes hanging from the low-hanging branches and the nose, eyes, and rugged back of an alligator. None of this scares her. Fear only comes when she can’t remember if she brought the hook she needs to get to the platform to get to her wheelchair that will take her back to her van. If she doesn’t have that, she’ll be stuck and doesn’t know what she will do. Fortunately, she brought the hook, and as the moon rises, she watches as “the sunlight sheens across the grasses and turns each patch of water into a pink pool.” The songbirds stop, and she hears the hoots of the first night owl. This fills her soul with hope, magic, and self-accomplishment.
As I read this, I reflect upon my eighty-eight-year-old father, who I’d recently took to a nature museum. Since he couldn’t stand for long, I placed him in a wheelchair. As I pushed it around, I saw the world quite differently. I noticed the museum’s railings were mounted at Dad’s eye level, the exhibits placed higher, which caused him to throw his head back and stretch to see them. Visitors darted in front of him, some standing in his line of sight as if he didn’t exist or was too old to matter. We skipped exhibits that were either impenetrable or where visitors were unwilling to let a wheelchair pass.
While Lambert’s memoir shows us one woman’s strength and courage in her battle to defeat fear, loneliness, and physical challenge, I’d like think this book offers more. It should make each of us question: do we build ramps for those differently able or do we simply ignore the problem and look away?
Debbie Hagan is book reviews editor for Brevity and author of Against the Tide (Hamilton Books, 2004). Her writing has appeared in Harvard Review, Hyperallergic, Pleiades, Superstition Review, Brain, Child, and elsewhere. She’s a visiting lecturer at the Massachusetts College of Art and Design.
November 20, 2008 § 6 Comments
Author Gary Presley is an occasional contributor to both Brevity and the Brevity Blog, and author of Seven Wheelchairs: A Life beyond Polio, new from the University of Iowa Press. We recommend his memoir, and recommend his thoughts on sypathetic and unsympathetic narrators:
I help lead a group that discusses creative nonfiction. There’s about thirty of us exchanging emails, and we all profit in dissecting an essay or a book chapter every week. In fact, I’ve hit up (Brevity editor) Dinty W. Moore regarding his editing experiences, particularly about publishing a piece with an unattractive or unsympathetic narrator.
I always knew I could be a jerk, although I don’t think it really came through in my writing when I stuck to essays. What I did learn when I set out to write in a longer form, though, is interesting. It may be a tough gig to be a jerk in real life, it’s even tougher as being a jerk who wants to write a memoir.
I’m what’s referred to as a “polio quad,” most likely the result of what is now called a “vaccine accident.” That happened long ago and far away. As you might expect, it made me angry, bitter, and oftentimes frustrated with my lot. But that’s something I hide from most people most of the time, even when I wrote op/eds about disability issues.
One day, though, I was inspired to write a wry and ironic essay about one of the practicalities of using a wheelchair — the essay was entitled “A Pot to Pee in.”
Why? I think because I was in the mood to be honest, perhaps even to be honest with myself, which is a trait I urge on others but often avoid on my own. Something good came of it, though. I discovered readers like honesty. In fact, several in my critique group said, “This is good. You need to write a memoir.”
And so I did. It’s called Seven Wheelchairs: A Life beyond Polio.
In writing the book, I did go beyond polio, down toward a place where I learned something about my life, about the person I had become, about living “boob-high to the world,” as my wife describes it.
What interested me, though, is more than one reader seemed puzzled over the anger and frustration and bitterness within the memoir. “That’s not the Gary I know.”
Sure enough. I was right. I am a jerk, at least sometimes, and thankfully mostly in private. I always knew there was wisdom in the novelist Peter DeVries’ observation, “Human nature is pretty shabby stuff, as you may know from introspection.”
But in writing the book, I also learned I am an observer, a person honest enough to recognize that element of jerkiness, forgive himself for it, and understand that by offering something “so bitingly honest that … readers sometimes cringe before turning the page … ” that I have been able to illustrate disability is a normal aspect with the human condition and to change a few minds about what it means to live with a disability, to recognize the need for equal access, and to think hard thoughts about institutional care and end-of-life issues.
Gary Presley www.garypresley.com
SEVEN WHEELCHAIRS: A Life beyond Polio
Fall 2008 University of Iowa Press