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.
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
February 19, 2008 § 10 Comments
From Gary Presley, author of the Brevity essay Proselegy and Coda
I’ve been banging my head against a memoir for two or three years – a book that’s only now crossed the copy-editing stage at the University of Iowa Press on the track to Fall 2008 publication (Seven Wheelchairs: A Life beyond Polio). As with most things written, the book went through more drafts than I wanted to make – from connected, related essays into a chronological narrative.
During the last state, I told a writer friend, unless you’re famous and can sell a gaggle of essays, a memoir writer may not think he is living a life with a rational, non-repetitive narrative arc, but he best find one if he wants to be published.
She replied with a question, “How would you explain narrative arc?”
She asked me that because I’ve never studied creative writing. I doubt I’ll ever be as famous as Grandma Moses – the famous folk artist painter – but I use her technique, which might be called primitive.
With that in mind, I told her I think a chronological narrative would have a “time arc.” When I wrote 100,000 words as a “memoir in essays,” I would pick a subject about disability, look at it from every direction, and write about it. I had essays about the disease; its treatment; the hospital environment; the rehabilitation environment; isolation upon my return home; about education and employment; and some discussing the nitty-gritty of disability.
The editor first said “Masterful essays, but there’s too much repetition. Try a chronological narrative arc.” I tried, but I felt too close to the material. Then the editor said “It’s lost some of its passion. Make the chapters more like the essays.”
There was the rub. It took me a long time to understand that if anger and frustration occurred when I was in the iron lung at age 17 that I did not need to re-state the origins of that anger and frustration when I brought up an anecdote later.
If I could put the effort in the Wayback Machine, I would outline anecdotes on index cards. Then before I began to write, and I would shuffle the cards around and play with their order – both in theme and in time.
Within the terminology of “narrative arc,” I think, is the idea that we build our lives around themes. My theme was living as a person with a disability in 20th USA, but the sub-themes are anger, and duality (the idea that a virus killed then-17-year-old-Gary and created crip-Gary, who is an entirely different bag of tricks) and a prosaic existentialism.
How that might translate in another writer’s life I cannot say, but I know this: we are different people to each individual we know, both because of their perceptions and because of the way we reveal ourselves to them. With that, there are an infinite number of stories to weave into any narrative arc.
___Further discussion can be found through Google with the search words “creative nonfiction” and “narrative arc” alone or together, including A Conversation with Rebecca McClanahan in the Kenyon Review and a nidus Roundtable Discussion — The Age of Creative Nonfiction.