Breath & Shadow
A Journal of Disability Culture and Literature
BEGINNING BREATH & SHADOW: CREATING A LITERARY COMMUNITY
"I think that it is part of our mission to provide an atmosphere
where people can start to think enough of themselves to become
I stumbled into a dream. It was not my idea to start a disability
literature and culture magazine. The credit belongs to Norman Meldrum,
who, along with Russ Anderson, founded and were the chief force behind
AbilityMaine. Back in 2002, Norm proposed that I take over "some sort
of arts/culture/writing component" of the AbilityMaine site. It seemed
to both of us that there was an increasingly obvious divergence in the
site's material: Norm's focus, and the main intent of AbilityMaine, has
always been activist — to provide resources and information that would
empower people with disabilities (PWDs) in Maine to take greater
control over their lives. However, my monthly humor columns, which were
often not overtly activist and which sometimes don't even address
disability directly, were becoming an integral part of the site.
Additionally, other readers were submitting personal essays and other
writings that did not fit into the category of information, resources,
As the readership's interest in more literary and personal content on the site became obvious, it seemed natural that I would apply my passion and growing expertise to this area, particularly as Norm needed to funnel his energies into AbilityMaine's increasing success at effecting social change. While I was thrilled by the idea of taking on the new "arts and culture" project, the potential size of the topic was daunting, to say the least. After all, "arts and culture" could include anything: visual art, theater, poetry, interviews with activists, and more. We could fill ten websites on each topic alone. But once we took into account the substantial limitations imposed by our budget and my own mental and physical disabilities, as well as the exigencies of keeping the site maximally accessible, we were left with the plan of a six-month trial period during which we would publish a monthly supplement to AbilityMaine. The supplement would consist of two or more pieces of creative writing, or writing that discussed some aspect of disability culture or literature.
Within this framework were major decisions still to be made: What differentiates culture and literary writing from activist writing? How would we delineate our scope and topics? From whom would we seek writing? And how could we create something new that nonetheless fit into the mission of AbilityMaine and its parent organization, Resources for Organizing and Social Change (ROSC)?
For several months, Norm and I tackled these questions. Stung by the injustices and frustrations I have faced as a writer who is disabled, I e-mailed lengthy manifestos to Norm on what we must not do, how we must not treat our writers. I gabbled excitedly to friends about the topics we could cover, the gifted wordsmiths we could nurture. I bolted upright in the middle of the night, grabbing a notebook and pen to scribble down my ideas before I lost them to sleep. Eventually, Breath & Shadow was conceived: a publication that would publish work on any topic but would accept writing only from people with disabilities. Our journal would seek out the highest quality poems, essays, plays, and stories but would define "quality" in a new way — a way that included work by people without extensive formal education and by those whose cognitive or emotional disabilities might spark nontraditional forms of expression. In short, we would embrace a "disability aesthetic" — work that may or may not be "about" disability but that would be informed by the author's experience of disability.
After more than a decade as an artistic transient — bouncing from publication to publication, trying to force writing about disability into nondisability publications while massaging writing that does not address disability head-on into disability magazines — I set out to build the home my writer friends and I deserve: a place where disability is a given, and where, as long as the writing is good, it could be about anything, and the impact of the author's disability on the work is valued, not denigrated or misunderstood.
Even though for years I've bruised myself by crashing against the ableist walls of publishing, I didn't truly comprehend how radical our plan was until I finished conducting research to verify that Breath & Shadow was as unique as my instinct told me it would be. As far as I know, Breath & Shadow is the only cross-disability literature and culture magazine that is written and edited entirely by people with disabilities.
Why is it so important to have a literary magazine whose writers are all disabled? Certainly writers with disabilities get published in nondisability literary reviews; I have, for instance. However, the poems and short stories I've written for nondisability publications rarely contain a hint about disability. In fact, I had a 100 percent acceptance rate in erotic fiction submissions until I submitted a story with a disabled narrator. Why did that story take so much longer to find an audience (which it eventually did) than my stories without disabled characters? Is it that most editors have trouble seeing PWDs as sexy or sexual? Or could it have been that the first two editors had recently published other stories with disabled characters and thus felt that disability had "been done"? I don't think this phenomenon is unique to my situation. In fact, one year a colleague and I each submitted two stories to the same anthology. Both of us sent in one story with athletic, nondisabled characters and one story involving characters with disabilities. In each case, the athletic stories were chosen.
The problem, as I see it, is that a magazine that does not take care to integrate disability into its material will end up neglecting it as subject matter; more than a couple of pieces on disability might be seen as superfluous. Thus, no matter how worthy our work might be, we are competing with others who write about disability for the limited number of disability "slots." Sometimes a paper or journal will devote a "special issue" to disability. But such issues tokenize disability so that it is ignored during the rest of the year.
There are scores of disability-related newspapers and magazines, but the vast majority address a single-disability population, such as people who are blind or people with multiple sclerosis. Often these are the newsletters of organizations that serve people with these conditions. Thus, their publications focus on research, treatment, fundraising, and other practical matters and often include articles by doctors, parents, or others who are not disabled. They are not forums for poetry or discussions on crip culture.
There are a few cross-disability magazines that focus on disability rights or wheelchair sports. There are even a handful of disability studies and literary journals. The existence of these periodicals, and their growing number, is encouraging. Journals such as Disability Studies Quarterly and Review of Disability Studies provide space for discussions of disability culture and for poetry, fiction, and other creative work. Still, like most other disability publications, these journals require that the topic be disability but not that the writers be disabled.
This is why it so important — and unique — to create space for writing by PWDs that is unrestricted by topic. Nobody wants to be defined by their disability — to have their work sought only when it fits into one category. For example, when I wrote a humor column for AbilityMaine about teenage bullying, which did not refer to my being disabled, some of the (nondisabled) readers complained: What was this essay doing in a disability newspaper? I was astounded. It had not occurred to me that I would have to make overt references to disability in each of my essays; disability pervades every aspect of my life. It is as intrinsic to my identity as my gender. Whether or not my columns refer to my chronic illness, they are all created with a disability sensibility. Just as being a Southerner or a Cuban-American affects a writer's perspective and bleeds into her work, so does living with disability. It is often not possible to divorce the way we experience the world as disabled people from what or how we write. This occurrence, more than any other, convinced me of the need for Breath & Shadow. I felt an imperative to support the freedom of writers with disabilities to write about anything and not to be pigeonholed as "disabled writers" based on our material.
When editors do not have an understanding of the disability aesthetic, a vicious cycle is created: since the gatekeepers lack awareness of the day-to-day aspects of disability, they are unlikely to publish stories that reflect a passing, yet intimate, knowledge of that world. As a result of this unwitting censorship, readers rarely come across nuanced portrayals of disability. The complexities of living with disability — both the physical or mental effects of the condition itself and the social effects of disability oppression — are left off the public page.
Thus, writers with disabilities are not afforded the luxury of a set of "givens" — of a shared universe with the reader. We must continually crimp and fold our writing — and therefore, ourselves — into a narrowly defined space. Therefore, to publish work in a nondisability publication, a writer with a disability often must "translate" or edit sections of her work to make it comprehensible or palatable to the nondisabled reader. To launch into a story about dating that happens to include the narrator's personal care assistant (PCA) — without explaining what a PCA is — usually means birthing an orphan, a work of art that will not find a home. Such pieces exist in the nether world between "acceptable" writing on disability — that which is spelled out, which features the disability as the main focus of the piece, and which falls into one of the stereotyped forms associated with disability — and "regular" (nondisability) writing, which can be about anything and with which writers can take risks and challenge their audiences. Without the freedom to explore all of the subjects that fascinate us, writers with disabilities are left with three choices: erase the disability aesthetic from our art, write only for disability publications, or write careful translations of the topics that inspire us, explaining disability lifestyle and terminology as we go.
The disability itself can also affect how we write. If writing is physically laborious for us, we may write very short poems, where each word holds the meaning of twenty. If we live with mental confusion or impaired memory, our writing may reflect that scattered consciousness with surprising word choices or fractured timelines. There are countless ways in which circumstances dictated by our physical or mental conditions can leave their imprint on the shape, subject, or form of our writing. This is part of the emerging disability aesthetic. And instead of dismissing or discounting these differences, Breath & Shadow embraces them.
* * *
How does Breath & Shadow complement the activist goals of AbilityMaine? In some ways, Breath & Shadow is an effort to extend and expand what's been accomplished by my humor columns. Although primarily crafted as entertainment, my columns are also intended to supply affirmation to my readership. By writing about my life, I seek to provide to my PWD audience the "aha" experience that feminists enjoyed in consciousness raising groups in the 1970s — the recognition of seeing one's own life reflected outside oneself — an altogether too rare occurrence for PWDs. While many of my columns are explicitly about disability — enduring an SSDI review, grappling with cognitive impairment, struggling to perform minor household chores — others simply relate tales of everyday life where disability is merely the backdrop. When I am lucky enough to receive fan mail, it usually includes some expression of gratitude, relief, or joy at "not being the only one." When we are alone with our struggles, we believe them to be individual problems, as opposed to societal ills. By providing a forum for writers with disabilities to tell the basic truths of our lives, Breath & Shadow seeks to be a vehicle for greater recognition of what unites the disability nation. Reading our lives reflected with humor, honor, and beauty can also counteract some of the messages broadcast continually by television, radio, and print media, that we are somehow deficient, less valuable, or to blame for our circumstances.
In this way, producing Breath & Shadow is a form of activism. By restricting material to that which is written by PWDs, we are refusing to perpetuate the history — and ongoing reality — of others speaking for us, acting for us, or taking steps "on our behalf." Sometimes it is helpful, even necessary, to have a friend, family member, or advocate take charge in this way. But too often, we have suffered when our efforts at communication are dismissed. Forced institutionalization, medication, and surgery, as well as segregation at school or in the community are some of the tragic results of nondisabled people speaking for us. There are smaller ways, too, in which we are diminished when we are denied personal expression: when a nurse asks my companion "Why is she here today?" or when an assistance-dog program trains its hearing dogs to perform tasks in a manner that human partners find demeaning.
By unambiguously defining Breath & Shadow as a journal where people with disabilities speak for ourselves, we short-circuit misguided representations from those who do not live disability. Obviously this does not mean that all contributions to Breath & Shadow will be representative of all people with disabilities. Different disabilities have very different effects. And even people who share the same diagnosis may be affected differently by, and hold vastly different views of, their condition. We hope that when we publish a piece that does not reflect the experience of some of our readers, the beauty of the language or the truth in the writing will create enough "aha" resonance that all will feel some greater connection to the community.
* * *
The mention of "community" brings me to my final point. As I write this article — less than a month after Breath & Shadow was announced — we have received almost 100 submissions and more than 120 subscriptions. Clearly this outpouring of enthusiasm and eagerness for the advent of Breath & Shadow is something to celebrate. It shows that we have been dreaming the same dream — that the community feels, as the staff of Breath & Shadow does, that there is a need for this project and that many want to take part.
Further, the type of submissions we're receiving speaks volumes about what PWDs feel compelled to write and their urgency in finding an audience for their work. Despite the notice in our call for submissions that Breath & Shadow accepts writing on any topic, all but a handful of submissions have been about disability: about treatments; about dying; about trying to communicate to friends, lovers, or the government what it's like to have a disability; about discoveries made through physical suffering; about kinship to others who are disabled; about the dailiness of disability — the way it affects eating, sleeping and waking, dressing, appreciating art. Many are overt pleas for understanding to the nondisabled world.
I have felt, and continue to feel, moved by the support and trust implicit in receiving so many submissions, many of which are nakedly personal, revealing great pain or passion. I also marvel at my good fortune that, as an editor, it is now my job to read poetry and essays and short stories. When I read an essay that quietly captivates me, or a short story or play that transports me to another place and time, or a poem that makes me catch my breath when it leaps, I'm so grateful to have this role. These are thrilling moments for me; my fervent hope is to share this thrill with you, the reader, when outstanding writing is published on this site.
The downside to this profusion of writing is that we can only accept a few pieces per month, which means that part of my job is also to reject the majority of submissions. This has raised some confusing issues. My main impetus for starting Breath & Shadow was to support writers with disabilities: To provide the opportunities I've been denied and to offer a "safety zone" for skilled literary artists to write about anything and everything. Further, AbilityMaine's policy includes publishing most material that is submitted to them as long as it pertains to disability in Maine; it's part of their mission to "give a voice to those who have none." Breath & Shadow has no such policy, although we take the intention of that policy to heart; if Breath & Shadow accepted all work by people with disabilities, it would not be a literary magazine but a community bulletin board. The goals we have set for ourselves are complex and could be viewed as contradictory: to "present in each issue two or more diverse and high quality pieces of writing" and "convey to readers and the general public (1) the richness and significance of disability literature; (2) a greater understanding of the disability experience; and (3) the importance of disability culture — for all people" as well as to "create publishing opportunities for writers who are typically denied access in the mainstream — especially writers who face barriers due to their disability, their topic, the way their disability affects their work, or factors such as lack of formal education or newness to the field."
The reality of my people, writers with disabilities, entrusting me with their work, and the knowledge of how hard it is to get a fair reading from a mainstream editor, makes it difficult to turn anyone away. Convention dictates that if I don't love the piece, I should post a form letter that says "no thanks." Traditional literary wisdom decrees that it's taboo to ask a poet to make a revision, to tell short story writers, "This isn't quite right, but please send me more." But the fact is that I am truly grateful for the efforts of each person who sends us his or her work. To everyone who reaches out, I say, "Please stay with us. Please remain a part of the Breath & Shadow community."
And once again I return to that term, "community." I've been lucky to have the support and advice of other writers and editors with disabilities whose judgment I trust. In sorting submissions, I've tested my opinions against theirs. Most have agreed with my appraisals. Some have encouraged me to ask for revisions, to follow my artistic vision that includes a tender approach, a commitment to give-and-take. Others have told me, "this is a literary magazine; take only what is the best. Don't ask poets to revise; it's insulting. If you compliment everyone, your words will become empty."
And the truth bubbled up from this feedback: Yes, this is a literary magazine. Yes, the power and value of disability literature and culture is best served by displaying our strongest and most transcendent work. And this is also a community endeavor. This is a project where the people who are the gatekeepers understand and respect all our writers and artists, where we know the value — and sometimes the immense effort it takes — to put pen to paper (or fingers to keyboard, mouth to microphone, or mouth to sip-and-puff). We need these people to keep writing their truths and to read Breath & Shadow. We need the community to keep Breath & Shadow going as editors, fundraisers, sponsors, and technical assistants. We can't afford to run this journal the way most are run or we will lose our sisters and brothers along the way. As people with disabilities, don't we know better than anyone else that the standard, one-size-fits-all way of doing things is not always the best? That it leaves many of us out? Breath & Shadow should be the place where risks are taken, where things are done differently. And, as we begin this venture, that is what we are trying to do: to keep our commitment to our readers, our writers, and our community that we will act with integrity — keeping our mission and goals in mind, even when they are confusing, contradictory, and challenging. After all, life with a disability is all of these things. Good writing should remind of us this and keep us on our toes.
* * *
Every issue of Breath & Shadow will be structured loosely around a theme. The theme for this issue, naturally, is "beginning." It's exciting, and a little scary, to contemplate beginnings. Mingled with my headiness in starting this literary and cultural venture is my fear that my illness will prevent me from carrying it through. In "The Book under the Chair," Tobias Seamon describes discovering his love for J. R. R. Tolkien's Middle-earth while recovering from surgery. Yet, even as he regains his health, Seamon reveals that he is preparing to undergo another surgery. Peggy Munson's poem, "How I Wake Up," leads us to realizations of how we respond to death and uncertainty. And the profile of Annu Sharma, our young, ebullient logo-contest winner, announces the imminent launch of her own web design site.
We are all of us beginning, today, by waking from our dreams. I've put on my glasses but I'm still waiting for my eyes to focus. The next few issues are taking shape: I see their colors, I sense their warmth, yet they're blurry around the edges. After so many years of dreaming, and with a fatiguing illness that weighs me down, it's hard to pull myself up into this new reality. I'm doing it. You're doing it. Please continue to subscribe and submit, to spread the word, to comment on what you read on this site. Together we're building something special. Thank you for sharing your dreams with me.