LET US NOW PRAISE DISABLED WRITERS
When I belatedly began to work on my doctoral dissertation a dozen years ago, at an age when most people are beginning to think of retirement, I decided to focus on disability literature, by which I meant literary writing in the traditional genres of poetry, fiction, memoir and drama by people with disabilities. My doctoral advisor, a man with a wide range of knowledge in reading education, had never heard of disability literature. Nor had any of the other faculty on my dissertation staff except as textbooks relevant to special education. This was not surprising since I had been doing my own personal research to come up with poetry that could serve as models for writers with multiple physical disabilities in a poetry workshop. What I found were, for the most part, isolated islands. One could find some stellar books of poetry by authors like Tom Andrews, Jim Ferris, Stephen Kuusisto and Jillian Weise, but even important collections like Kenny Fries anthology, Staring Back had the feeling of flower plucked from disparate fields. As pioneers they worked from their own personal experiences with no real references to the work of possible predecessors like Larry Eigner or Vassar Miller – or each other.
Luckily, as we exit the year 2017, that situation has radically changed. One of the first to recognize disability literature as a legitimate genre was Jim Ferris who, as early as 2006, in addition to laying down tentative characteristics of disability poetry attempted to include in his own poems figures like Whitman and Dickinson who could serve as connections to a tradition of embodied poetry. Others have continued that mission and now Ferris, Kuusisto and Weise themselves have become influences on a new generation of writers with disabilities.
As the editor of Wordgathering, I was curious about the writers whose work has been making its way into disability literature today. Who were their literary influences? What specific works might have made an impact upon them? I invited writers who have been published in Wordgathering to talk about a particular poem or work of another writer with a disability that they felt had made a difference to them and their writing. The responses were varied and interesting. I've printed them below in the form that they came to me with the hope that reading these words will spark further explorations and connections.
I lead off with two accounts in which the reading of a particular work created a motivation in potential writers to want to write themselves. The first comes from poet, fiction writer and essayist Ana Garza G'z. Ana's narrative was the lengthiest I received, but I begin with it because I think that it reflects the experience of so many other beginning writers.
Nancy Mairs taught me to write disability. Until I read her, what I knew about my flavor of otherness belonged to people who didn't know. The first two people with disabilities I met in a book were the biblical Samson and Isaac. I thought of both as strong, one in exacting revenge over the Philistines and the other in knowing he was being deceived by his second oldest son, but every homily and literary discussion I heard about them emphasized their helplessness, one a broken shell, the other an easy mark. Other people with disabilities, from Movies and TV, were more of same, helpless bodies needing to be dressed and fed and pitied. The third person with disabilities I met in a book was Helen Keller, her words about the finger spelling of "water" and the substance from the tap. It was in a third or fourth-grade reader, and having learned to use a white cane two years earlier, I found myself in her description of that moment when the world becomes a thing to be managed, but again, the discussion we had in class, like the discussions I've heard since then, was about the humanizing of a creature through language—redemption at its most literal. The fourth imperfection I read about was in a formula Gothic by Joan Aiken. She was a child, savage till a physician discovered she was deaf. Then she was smart. Then the book climaxed with the villain tossing her into the sea, and in the afterglow that followed, the heroine was comforted by the thought that the child might have been a little slow: all was just as well. After that, I became a minor activist and heard about the opposite extremes: the adult Helen Keller, with her social causes and her normal life, and the leaders of present-day organizations for the blind, with their marches and their independence and their reliance on no one and nothing except the Social Security Administration, which sent out monthly checks in lieu of actual equality of opportunity.
At that point in my life, I was in college, about to flunk out yet again, unable to connect with anyone or anything in any meaningful way, when I read Nancy Mairs, "On Being a Cripple." That was a white-cane revelation for me, a flashback of discovering the name for water at the pump, a moment of my experience as a thing to be owned. Mairs wrote about multiple sclerosis the way I thought about blindness: a fact of being, a set of minutiae, an overarching theme that was both irrelevant and deeply significant. I sat in my dorm room, listening to my computer's robotic speech move through her fall in the bathroom stall, her claiming of the word "cripple," her comments of the petty difficulties and petty successes, and the rest of it, and I cried, thrilled to know my experience was valid and ordinary. My excitement was short-lived, of course, stopping the second the class discussion started—more of same.
By the end of that semester, I put Mairs in a mental drawer and forgot about her. The first time I tried to write fiction was several years later. My protagonist was sighted because I didn't know how to write about a blind person. It wasn't that I couldn't put a white cane in her hand or have her reach for a slate and stylus to take down a phone number, though explaining both would be hard enough. It was that I was used to reading about sighted characters doing sighted things, like seeing each other across a crowded room or making eye-contact at crucial moments. More than that, it was about expecting able-bodied readers to care about the concerns of people most didn't consider quite human. The piece I was working on was a formula romance. I wrote most of it over a summer, sitting for three or four hours at the computer almost every day. As I settled into a routine and felt more comfortable with the craft aspects, I started to imagine my protagonist as someone with a disability, someone more short-sighted than usual, and somewhere in the middle of that, I stopped the romance to write a short story about a blind character who was sighted as an adult. Each time I moved deeper into writing about disability, I thought about Mairs', the opening scene of "On Being a Cripple, " where she falls in a public restroom as she's leaving a stall. It's a scene about the reality of life in a crippled body, and it's a scene about the joy of being alive. Eventually I knew that I had to work for the same honesty.
Like Ana Garza G'z, poet Liv Mammone had something of epiphany in encountering the work of a particular writer. In this case, it was the work of Jennifer Bartlett. To read Mammone's work today, one would never think that she was once a bit apprehensive about stepping into the world of poetry as a disabled writer. The paragraph below helps bridge the gap.
I had no idea there were disabled poets before Jennifer Bartlett. Of course, I knew there must be. But there's a difference between knowing and feeling grounded in the knowing. To read, in the opening page of her Autobiography/Anti-autobiography: "where I tell myself/you shouldn't have fallen/I mean to inflict/while the critic of the world watches/o stupid, stupid world" was to hear my own thoughts when I had never had the means even to articulate them. To read: "to be crippled means to have a window/into the insanity of the able-bodied/to be crippled means to/see the world slowly and manically/to translate to record l to adapt/to be crippled means to have/access to people's fear/of their own erosion" presented me with power. To read: "I am all motion and/this motion is neither weak nor hideous/this motion is simply my own" gifts me with a level of self love to try and reach as I live my life. Bartlett's spare language interrogates and cuts keenly through notions of "poetics; " utilizing only the shortest words to give us the straight talk on what she sees. Then the collection, like a camera, pans out away from the "speaker's" body and onto the wider world. The second half's Anti-autobiography is a mess of time, space, lists, fragments, questions. It's a messy, dirty love affair of bodies and geography. It lacks the cohesion of the first half, but that, too, feels a product of Bartlett's deliberate sharpness. She is a writer, and person, who demands space to unapologetically hold all her contradictions and the lack of narrative in the work feels both assertive and intimate. I saw, reading it, a person of her body but also interacting forcibly with the world outside it. Whether reading a list of streets the speaker makes their way down, a friend's birthday card, or the description of a lover's body; this collection told me in no uncertain terms, "you live in the world and deserve to. "
If there is a poet more willing to challenge public perceptions of disability and to turn the world's stare back on itself than Jennifer Bartlett, it is Jillian Weise. Ava Wing, an accomplished writer in many genres, comments on Weise's impact upon her.
Jillian Weise's work gets me where I live. Her poems about her experience as a woman, as an amputee, defy shame and false sentiment. She stands her ground—I am going to keep telling you who I am, what it feels like to be me—without ever denying how hard that sometimes can be on one leg: "Change my settings, " she asks, referring, literally, but not only, to her computer-controlled knee. Jillian shows me how to be brave, how to stop denying the reality of my own life and disability. "Know where your limbs are at all times" Yes, acknowledge the body–its sexuality, discomfort, difference. She claims: "There is nothing powerful/about me though you might/think so from the way I spit." But to me she is powerful because she spits out the words that need to be said. Have I reached her level of openness? Heck, no. But I hope to. Meanwhile, I am more than grateful Jillian continues to write about our shared disability in her strong, honest, wise and wise-cracking voice.
Those who read disability literature, particularly poetry and memoir, know that among the many themes that emerge repeatedly is living with pain. Pain figures prominently in the work of Marlena Chertock and Liz Whiteacre. Chertock, whose book Crumb-Sized came out earlier this year, focuses on one influential poem in particular. Chertock's citing of Camisha Jones' work is important on another level. It is an embarrassing fact that the overwhelming amount of disability poetry written comes from white writers. Connecting to Jones' work helps to enlarge that territory.
"Ode to the Chronically Ill Body" by Camisha Jones distills disability and chronic pain for me. Every time I read it or hear her read it aloud, I cry internally or externally. This poem appears in her collection Flare, which is full of strong poems about disability, hearing loss, race, appreciating your body, Beyonce, and more. In "Ode, " Camisha thanks and laments her body at the same time. "My feet a landscape of mines … My back where the sharpest knives are kept / My hands a scatter of matches ready to spark into flame, " she writes. These vivid images suck the air out of me. The way she combines the senses, a quickly paced rhythm, and deliberate line spacing pushes her voice forward. "This body crumples like paper / I crumple like paper because of this body, "she writes —describing pain and the sense of loss one experiences with an invisible and chronic illness with such exquisite detail and musicality.
Liz Whiteacre's experience with another poet who writes about pain is a bit more extensive and illustrates the kinds of collaboration that can take place when connections between writers with disabilities are made.
Laurie Clement Lambeth's collection Veil and Burn (National Poetry Series, 2008) helped shape my writing and teaching of poetry. I'm now an Assistant Professor of English at the University of Indianapolis. When I first started writing about my spinal injuries, someone recommended Lambeth's book, which explores her early years with MS. The way she weaved narrative and metaphor made her pain and physical symptoms so concrete and visceral—I thought, that's something I want to try to do. She set the bar high in my head, and I strive to reach it with each new poem. I eventually got to meet Lambeth and collaborated with her on a video project designed to engage budding poets. Readings in writing courses that explore abstraction (like physical symptoms, identity changes, emotional responses, etc.) help students express their experiences in more complex ways. When we studied Laurie Clements Lambeth's poem "Hypertonia" in a composition course and did a 5-minute simile exercise to describe a pain the students had experienced, it was really rewarding to see students articulate pain concretely. Discussion centered on how figurative language helped them better appreciate what life is like for Lambeth, who has MS, or a classmate who shared she had fibromyalgia. The more readers and writers engage with works in disability literature, the more I hope they will understand themselves and be encouraged to talk about their bodies, aspirations, and challenges, in ways that will create stronger connections between people.
All of the writers whose work has been cited as making an impact so far have been veteran writers, in most cases, a generation older than the writers that they influenced. This need not necessarily be the case. When Liv Mammone wrote of the impact that Jennifer Bartlett's work had on her own writing, she also mentioned the book of another writer, Molly McCully Brown, whose first book is receiving wide attention. As Mammone reminds us, all of us involved in disability writing are part of a history, often obscured, that needs to be brought back into light.
There is a level of terror that I experience as a disabled woman with an interest in history. On the one hand, I demand the right to know bodies like mine have always existed. On the other, it usually means learning about the acts of violent erasure that were perpetrated on them. At best, those erasures are presented with head shaking and sighing, framed as, "isn't that lovely that we've moved beyond this. " As though it isn't happening all over the world still. Molly McCully Brown is clearly an unabashedly unafraid poet. "In The Central Virginia Training Center, "the opening poem of her first collection, she confronts a type of survivor's guilt that I have felt in my own stomach. "And by some accident of luck or grace,/some window less than half a century wide,/it is my backyard but not what happened/to my body—" This poem, before Brown spends the rest of the collection throwing her expert and elegant voice into characters of patients, priests, and nurses, functions like the invocation at the start of an epic to a dark and fanged muse. The emdash that closes this poem feels like the speaker catching her breath.
If, as mentioned above, the poetry that I come across as editor of Wordgathering is largely by white writers, it is also true that the majority of it is also by Americans. While there are both historical and practical reasons for this, it is also true that neither disability itself nor the experiences of reading other writers that strike a resonant chord with us has any borders. Poet Nuala Watt's work draws from the language and landscape of Scotland where she lives. Naturally, in considering the poets who influence her work, Watt looks in a different direction than many writers mentioned so far. Like Mammone, she taps the poem of a contemporary. The work of Sarah Golightley and the poem that Watt cites (as well as some of her own) are among the many made available in Nine Arches Press' recent publication of Stairs and Whispers: D/deaf and Disabled Poets Write Back, the first major anthology of the work of UK poets with disabilities.
I admire the way Sarah Golitghtley's poem 'V Template, Disability 2.0' satirises conventional narratives of ability and disability. It consists of CV advice that aims to help disabled people navigate a society and a benefits system that understands us primarily in terms of what we cannot do. To exploit this narrative of overwhelming incapacity can be the only way of achieving financial stability in a world where paid work can be difficult to obtain or keep. A significant employment gap affects disabled people. Equally the poem satirises the positive but partial picture created by conventional CVs and the language used therein.
'Open with your illness summary: two lines, catchy, to the point…outlining most significant qualifications that establish your credentials'.
Golightley highlights the ability/disability dichotomy with her savage bullet point: 'Proportion of human to disabled that you are'. The poem is both hilarious and discomfiting – it reminds me of encounters with benefits assessors during which I concentrated exclusively on my extensive practical difficulties with no reference to anything that might make me seem competent. This was not what I wanted to do, but I felt it was the only option, as it is the only frame of reference the system understands. The poem further undermines factitious dichotomies through its language use and formal choices –with its bullet points and prose it does not look like a conventional poem, but it fulfils a poem's primary function – to make us reconsider the world through unusual combinations of language and ideas.
Aside from Nancy Mairs, whose work deserves rediscovery by today's writers, the influential works mentioned so far have been primarily poetry. Lizz Schumer, a poet, essayist and novelist, chose a book of prose as the one that stands out for her.
The book that made the biggest impression on me as a writer is The History of My Shoes by Kenny Fries. In this book, half historical account, half memoir, Fries describes his life as a disabled man through the lens of evolutionary science and Darwinism. By doing so, he presents disability not as an obstacle to be overcome, a burden to be borne, but as a feature of the diverse world in which we live, and a feature of his life, as well. The book is fascinating and informative from a scientific point of view, which balances his intensely personal narratives with a universality all readers can likely understand. As a personal essay writer, I find that's the most challenging aspect of the craft – how to explain a highly individual experience in such a way that my reader can identify with it, without sacrificing any of the unique elements that make it my own. It's challenging enough to write about disability without the expected tropes of victimhood or inspiration porn. Society has taught readers to expect one or the other, and often rejects disabled characters or writers as defined by their own narrow concepts of disability, but Fries' work falls outside both categories. By connecting his own story with the scientific world, Fries soundly rejects the idea that his narrative must be defined so narrowly. It's a masterful book, full-stop, but especially exemplary as a work of disability nonfiction.
Fries, of course, like Schumer herself, is a writer who feels at home in almost any genre. As Schumer points out, books that can combine the personal experience of disability with material that usually thought of as being as informal as science, are another avenue for creativity, and books such as Fries' are rare.
The final writer that I asked to contribute to this essay was Michael Uniacke. Like Fries and Schumer, his current focus is on prose – historical fiction and memoir. Like Watt, he comes from a non-American perspective; in Uniacke's case Australian. Uniacke chose someone who was not a writer herself but whose influence upon him was transformative. In doing so, he also reveals something that Deaf culture might teach writers of disabilities literature.
In 1993, Elizabeth Hastings became Australia's first Disability Discrimination Commissioner. She was in a wheelchair following childhood polio. I knew her before then, and worked alongside her on a disability advocacy committee or two.
In her role as DD Commissioner, she travelled all around the country, and gave numerous speeches. Reading some of her speeches gives an impression of a woman of wisdom, reflection and insight. She was keenly aware that this was the first time Australia had the experience of a high-level commitment to the rights of people with disabilities, and education was a major part of the way she gently and cleverly raised the profile of what was then a new social issue.
Good speeches reflect back to the audience the human experience. Hastings deftly used her lived experience of disability to excellent effect, and humanised her cause. There was one fragment of one of her speeches I have never forgotten. It was just a few words, but they have stayed with me.
"Certainly, my disability is not always attractive, convenient or desirable but it is my life and I do not wish it to be otherwise. Not everyone with a disability feels this way, but so many of us feel as I do. We do not wish for a cure but do wish our equipment would work and that we could use buildings and services just the same as anyone else. "
I was familiar with the Deaf notion of lack of interest in becoming hearing, of being cured of deafness. I used to think it was one more reason why Deaf people had a lukewarm attitude towards disability. But this was the first time I had seen it expressed in terms of physical disability. I suddenly had a significant and shared link to other people with disability.
She helped me to understand that sometimes, disability just is. I knew that about deafness, but it was a revelation that this could be so for many other people with all kinds of disabilities.
Hastings died in 1998. What was a radical sentiment then is far more common now. She was a psychologist and educator, but her speeches reveal the qualities of good writing: originality, sensitivity, and prescience. I miss her.
Back when I was working on my doctoral dissertation, disabilities scholar and literary jack-of-all-trades Petra Kuppers allowed me to look at manuscript she was working on for a book tentatively title Disability Culture Poetry: Pleasure and Difference. Each chapter in the book focused upon the work of a particular poet. In some cases it involved a single poem at other times the writer's entire oeuvre. Though various chapters were eventually published in periodicals, including one on Kathi Wolfe in Wordgathering, the book itself never came to press. I mention Kuppers' efforts because the responses of the writers above demonstrate that those connections with and influences of other writers with disability are there. Now it is time for us to recognize and act upon what Kuppers' manuscript took as a basic belief over a decade ago: the literary work of writers with disability is worth writing about.
In the Book Review section of each issue, Wordgathering tries to make the case for the value of disability literature by providing lengthy and, hopefully, thoughtful looks at new books in the field, but that in itself is not sufficient to recognize the work of the writers important to our field. Wordgathering invites, perhaps I should say challenges, those of you reading this piece to craft essays that focus on the work of individual writers who have contributed to disability literature. If you send them, and they are well-written, we will publish them.