2006 - Vol. 3, Issue 5

Part I

When I started Breath & Shadow, I listed one of our goals as "promoting disability culture." I didn't have a precise definition of disability culture in mind, but as Supreme Court Justice Stewart believed of obscenity, "I'd know it, when I saw it." In fact, I used the phrase "disability culture" pretty much interchangeably with "disability aesthetic," "disability perspective," and "disability consciousness" to describe what I was looking for in writings submitted to Breath & Shadow.

However, as submissions came in, I discovered how ethereal my concepts were of what "disability culture" was and thus, what was appropriate for Breath & Shadow. Members of the editorial board raised these questions, too when they asked me how to evaluate submissions. Some readers also, especially those in academia, asked me to define "disability sensibility" or asked me to point them toward examples in literature that embody the disability aesthetic Breath & Shadow purported to espouse. Perhaps by exploring these questions here, we can move toward defining these emotionally and culturally meaningful, yet elusive, terms.

Since Breath & Shadow only publishes work by writers with disabilities, why does it have to define "disability culture" at all? Isn't anything it publishes automatically an example of disability culture?

There are many examples of disability culture that are unambiguous. The intellectual, artistic, or activist pursuits of individuals or groups of people with disabilities (in which I'll include, for the sake of this discussion, culturally Deaf people and—or Deaf culture), in the name of their disability experience and—or for the reclaiming of their power, certainly fall into this category. Disability lifestyle magazines and pride parades, disability studies departments at colleges, VSA Arts installations or music festivals of blind musicians, and "Deaf President Now" or ADAPT protests all come readily to mind.

Breath & Shadow has printed many pieces that fall into this unambiguous category of disability culture. We publish interviews of disabled artists and activists, essays about the socio–cultural or personal impact of having a disability, and reviews of films or novels with disability themes. Such pieces are not only about disability culture, but because they focus on people or events important to the disability community, the articles are creating disability culture, as well. We have two such examples in this month's issue. One is Kari Pope's fascinating interview of modern–day renaissance man, Lynn Manning — a playwright and performer. The other is "The Trouble with Inspiration," in which Steven Brown of the University of Hawaii's Center on Disability Studies, addresses the almost ubiquitous experience of people with visible disabilities being told we are "an inspiration."

The tricky part is of defining disability culture writing is when we receive "creative writing," i.e., literary works — short stories or poems, for example — that are not about disability. How do we say one poem is representative of the disability experience and another isn't, if both are written by people with disabilities, yet neither of them address disability head–on?

You may be wondering, especially if you are a new reader, why Breath & Shadow publishes any poems or stories that are not about disability in the first place. Shouldn't disability culture writing de facto address disability? My answer is no. In fact, the journal was founded on the principle that it would nurture artwork that presents disability consciousness without needing to spell out details about disability, thereby providing a place for writers with disabilities to publish without having to be confined to stereotyped boxes of "disability writing" and "nondisability writing." (For a more detailed history of the origins of Breath & Shadow and my ideas about why this aspect of the journal was important and what we hoped Breath & Shadow would accomplish, see my editorial for the inaugural issue at http://www.abilitymaine.org/breath/intro.html.)

With Breath & Shadow's invitation to write what's important, meaningful, and exciting without regard to topic, I expected a new type of writing to emerge: writing where the backdrop, the imprint of disability, was evident in the tale — disability as the inspiration, or a factor in the execution, but not the sole condition. In fact, part of the reason I chose the words "breath" and "shadow" for the name of the journal was my idea that this underside of disability culture writing — where the shadow of disability fell over the work, but did not obscure or replace it — would come to define the publication. These writings, not explicitly about disability but containing some background or reference, were what I thought I'd "know when I saw it." I couldn't conceive of the myriad forms it would take because I believed that many had not yet been created. I was hoping for a disability version of the Harlem Renaissance. This is what I felt would emerge as "disability culture writing": writing that is created by someone who lives with a disability and whose work reflects some aspect of that lived experience, even if in a subtle way.

I also expected — and still believe — that a body of work will develop (and actually already exists, but needs to be unearthed) that will share common traits which make it "disability culture writing." In other words, since writers with disabilities share common experiences as people with disabilities in American society, our work will tend to reflect some common aspects or characteristics, such as topic or style. My discussion with Deaf art curator, Brenda Schertz, which appeared in the April 2004 issue of Breath & Shadow, showed that such similarities had already been found in Deaf culture (visual) art:

BRENDA: [There is a] Deaf Art sensibility. In 1989, a group of Deaf artists got together and decided to put together a manifesto. They had noticed there were many similarities between several Deaf artists. And they felt there were some tendencies that Deaf artists gravitate towards. One point mentioned in the manifesto was the tendency to exaggerate one body part and show other body parts much smaller. For example, the mouth is exaggerated while other parts of the face are underemphasized. Many artists who had not read the manifesto had that tendency already. That's one example of a sensibility that is created by a shared experience  .  .  .  and shared experience includes communication barriers, language oppression, and becoming connected to the Deaf community. Many Deaf people had grown up without much connection to the Deaf community. When they do finally meet other Deaf people and become involved in the Deaf community, that process of being acculturated to the Deaf community often appears in their work.

One example of that is Susan Dupor. When she finally developed a social network in the Deaf community, she painted I Interesting Hamster, which is a reflection of her experience at a mainstream program. She realized she was not alone in this experience that was needlessly imposed on her. It is an image of seven students with a cross–section of their heads. The diagrams in their heads only include the mouth and the ear — not the brain, the eyes, or the nose. This is a social and political commentary trying to pass the message to educators and parents: "Teaching us to speak and to listen was not time well spent; we should be using sign language (using our eyes) to learn visually."

SHARON: The manifesto also says Deaf Culture Art "can be identified by formal elements such as Deaf artists' possible tendency to use contrasting colors and values, intense colors, contrasting textures." Why do you suppose that intensity and contrast are so important in a Deaf Art sensibility?

BRENDA: Other Deaf artists have mentioned that there is a strong need to shout out their message, to make that message more powerful. You could say we felt invisible. It is not always that way, but there is a strong need by the Deaf artists to pass on their message that these things that happened to them shouldn't have.

SHARON: Is there a difference between Deaf Culture Art and art that simply was created by a Deaf person?

BRENDA: Yes, there is a difference. Art created by a Deaf person does not mean it is has Deaf themes. Most Deaf artists do not work with Deaf–related themes; they paint portraits, landscapes, and still lives. That is not Deaf Art. When a Deaf artist shares his/her experience as a Deaf person that is called Deaf Art.

Schertz makes it clear that simply being a Deaf painter does not make the painter's work Deaf culture painting. Similarly, Steven Brown has written that disability art is art whose central theme expresses personal experience with disability. Thus, relatives or caretakers of people with disabilities can also make disability art. Brown states that he is always an artist with a disability, but that he is a disability artist only when his writing has directly to do with disability.

Nonetheless, I maintain that there is room for another type of disability culture writing, the creative form(s) Breath & Shadow seeks most assiduously — pieces not necessarily about disability but that carry an impression of disability with them. Does this mean that all writing by people with disabilities is disability culture writing? No. That is one of the things that makes it hard for Breath & Shadow editors to choose which pieces to accept. But, in order to get to a place where writers with disabilities can create the "new art" of disability culture writing, we first must provide space for any topic.

This is why I created Breath & Shadow as a space only for writers with disabilities. I think disability culture writing is still at the developmental stage of needing this "separatist" space in order to grow. (Thus, I must leave aside, for now, the issue of nondisabled people writing about disability.) Then we can look for the flowers and fruits of new art. I think we are growing it. It is still in its seedling stage.

Indeed, we in the disability literary world don't seem to have caught up with Deaf culture visual artists: The "shadowland" of disability writing, which I felt had the most area for growth and differentiation from the mainstream — as the truly unmined vein of disability culture — has been very hard to find. Most submissions Breath & Shadow receives are explicitly about disability.

I think one obvious for why the vast majority of submissions are "on the nose" about disability, even though we've made it clear we're open to any topic, is that people with disabilities are desperate to be listened to, seen for who we are, believed, and respected. In a world that looks the other way when we show ourselves, people with disabilities crave to be known. There is a deep hunger to write about how we are cut off, ignored, abused, and misunderstood; by writing the truth, we hope to change such mistreatment. Poem after poem pours into my inbox that says, in essence, "I am just like everybody else. Don't dismiss me." Personal essays tell of triumphs over limitations imposed by the writer's disability or by ableism. "Recognize me," they beg, "I am worthy." Once writers with disabilities have had this need answered, perhaps more sophisticated or diverse writings — including those on other topics but with a disability shadow or sensibility — will develop.

Another reason that has become startlingly clear for why Breath & Shadow receives primarily disability–centric writing is that writers with disabilities are looking for an unbiased forum for our work to be evaluated in. For, with rare exceptions, the literary community does not want to make a place at the table for us. That point has been driven home forcefully to me in the last couple of weeks. It's as if the universe conspired to bring examples for this editorial from every piece in this month's edition.

For instance, in his StaffShot, Norm Meldrum says, "AbilityMaine, and, later, Breath & Shadow, were started because of my experience with social discrimination. As a result of these experiences, I believe all AbilityMaine/Breath & Shadow jobs should be held by people with disabilities, or directly managed by people with disabilities." Then I read this remark in poet Jill Khoury's cover letter: "Mostly, I do not write directly about my disability. I am sending you these particular poems because I am hesitant to try them elsewhere."

Initially, I was surprised by Jill's comment because I felt her poetry was stellar and should be sent to top–quality mainstream markets. However, as Jill, Breath & Shadow writer and editor Erin Lewy, and I discussed the issue, I was reminded that Jill's comment is just a ripple on the surface of the deep lake of shame most writers have about being disabled, a lake that is kept filled by the ableist attitudes of literary gatekeepers (editors, publishers, etc.). When the gatekeepers are disabled ourselves, writers are dealing with an entirely different situation, as Jill, Erin, and I discussed:

SHARON: Jill, about your biographical note — I think it's particularly relevant that you mention your hesitancy to send poems about your disability elsewhere. Since that's pretty much the main reason for the founding of Breath & Shadow, I'd like to keep that in.

JILL: I want to tell you how much it means to me to be published in your magazine. For a very long time I have struggled with the concept of "identifying as a person with a disability." I feel so ambivalent about it that I nearly went on for a Ph.D. in disability studies after my MFA, and then didn't.

To me, the disability studies movement seems all about correcting the injustices of the past, and educating nondisabled people to be mindful of their actions so that less injustice is committed in the future. The fact that I can explore the meaning of disability in a genre (poetry) that I feel so comfortable with has helped me reconcile myself with this identity, and also, I hope, perform a type of advocacy based on an approach that is more creative than critical (although the critique is apparent). Thank you so much, again, for my publication in Breath & Shadow.

SHARON: This is deeply meaningful to me. Thank you so much for sharing [your experience]. I'd like to share your comments with the other editorial staff and/or possibly at some point include them in grants or donation requests. We are finding it hard to get grants because we are not fitting into the idea of "charity" that most associate with disability, and the arts and social justice organizations don't seem to "get" that disability is a social justice issue.JILL: It's frustrating that social justice organizations don't get that it's a social issue. Providing this creative outlet gives agency back to people with disabilities — gives us a way to narrate our own bodies/lives instead of "being written" in/by others' scripts. That's a serious step in becoming recognized as a social group.

ERIN: Part of why I love Breath & Shadow is that I also fear sending my writing to other places or even trying to show anyone else (nondisabled) anything about disability. I want to share this about one of my stories in an anthology:

The editor was really mortified by comments on my story made by the copyeditor. There were red markings all over it, e.g.: "This person can't go fast. Why is she writing that she is rushing through things?" and other totally off judgments about what a person with a disability can or can't do based on what the copyeditor thought she was seeing. And that was just a character with a cane.

The editor later said, "I might send you these notes just to give you an idea of what I went through to get this story intact in the book with this ableist person on my butt." To this day, I haven't seen the notes; I really think she was scared to let me see them.

I notice we who have physical disabilities use one cane a lot in stories [that we are trying to get published] because it's like, "Look, it's not a chair or even two crutches or two canes. You can deal with this, right?"

My main character in "Words" [Breath & Shadow, Vol. 3, No. 1] is very very disabled; it makes me terrified because I am saying to the public 'This person is so, so, so, so much more worthwhile than you think.'"

So, it seems that part of the definition of disability culture writing must be the location of the work, i.e., the journal, publisher, department, or other environment that makes writers with disabilities feel free enough to write truths about disability, particularly "unpalatable" (to nondisabled readers) truths. In this way, Breath & Shadow (not to mention Kaleidoscope, Advocado Press, disability studies departments at colleges, and other disability arts organizations) is already fulfilling its goal of encouraging disability culture writing, simply by making a welcoming environment available.

While a stepping stone, this certainly cannot be enough. It does not answer what disability consciousness is in a specific story or poem or piece of creative nonfiction. It does not answer the question that our editors must ask ourselves every time we read a submission: "What does Breath & Shadow, at its core, want to publish and promote? What is disability literature (aside from literature about disability)?"

Common Themes: Could these be part of the disability aesthetic?

So, if a story or poem is written by a person with a disability, but it is not focused on disability, are there other aspects of the piece that might make it fall in line with other stories by people with disabilities? Below are some overlapping points of reference that I believe are part of shared disability experience. Of course, there will always be exceptions, but I've made these observations based on my own work, the 700–plus submissions I've read for Breath & Shadow, and conversations I've had with other disabled writers. I've separated common themes into categories to help me discuss them in an organized manner, but there is tremendous overlap among categories.

Medical Experience

Tales about medication, doctors, surgeries, and hospital stays seem endemic to disability writing. Many writers are angry (see further down for more on anger) about forced druggings or institutionalizations or unnecessary surgeries. Others are grateful for lifesaving treatment. But plenty are matter–of–fact, neither condoning nor condemning medicine. Indeed, writers with disabilities frequently use these repeated medical experiences simply as tropes or mirrors to display other truths about their lives. Sometimes they are backdrops or markers of time. Indeed, I think it is this straightforwardness about mental or physical suffering or trauma that may well be one of the most unique, obvious, and salient disability culture writing themes.

Confinement

Restriction, constriction, isolation: these are the bonds of disability and/or ableism for many writers. Institutionalization, isolation, or lack of access due to attitudinal or physical barriers, or the limitations imposed by the disability itself, all present themselves in the writings we receive. Indeed, even the way a piece is written — using all capital letters without standard English or grammar or many spaces between words instead of punctuation — may indicate forms of confinement: using hands that shake or a communication board may compel the writer to get the concepts and language out before focusing on the greater trivialities of "proper" language or style. This leads to...

Communication

There are so many ways that communication is urgent for writers with disabilities that it's hard to know where to start. First of all, the aim of almost all writers in getting their work published is communication — telling their story to the world. But when disability enters the picture, there is also the intense desire to be heard, believed, and understood, often because being denied recognition has been a tremendous source of pain and oppression in the rest of the writer's life. The disability itself might interfere with communication — physically, emotionally, linguistically, or mentally. Or, nondisabled people may refuse to communicate in the way the disabled person needs.

Thus, we receive many, many submissions on the theme of "listen to me, believe me." But we also receive submissions that take on the topic of communication directly in some way, whether it is about language, verbal abilities, the larger concept of being ignored, or the disconnect that happens when nondisabled people say bizarre or offensive things about our disabilities.

With communication, as with confinement, there is also the opportunity for the topic to translate into the style or presentation of the work. For example, many people with disabilities use software called "Dragon Naturally Speaking." This speech software allows a person to "type" with their voice. The term "dragonism" has arisen for words or phrases that sound similar to what the Dragon user meant to say, but that have completely different meanings. Those of us in the disability world have gotten used to figuring out what the speaker/typist really meant.

For instance, a friend with severe asthma once sent me an instant message that said "Miasma has been bad." A poet's cover letter to Breath & Shadow said that his poem on tigers had been "fiercely published" in another journal. In these cases, the dragonisms lent themselves to poetic usage. My friend's asthma, which is part of her disability, has at times been life–threatening — a miasma, to be sure. And, while "previously published" is what the poet meant to say, I was tickled that a poem on tigers was "fiercely" published — I saw it snarling on the page.

Floyd Skloot, whose essay, "Gray Area: Thinking with a Damaged Brain" won multiple awards after appearing in Creative Nonfiction, speaks directly to using his brain misfirings for creative use. Searching for the word "seizure," he finds "geezer," and describes becoming disabled thus: "overnight, I was geezered." In turning over and tasting the word "insult" from every angle — as a brain injury is termed an "insult to the brain," he declares: "I avenge myself on an insult that was meant, it feels, to silence me by compromising my word–finding capacity, my ability to concentrate and remember, to spell or conceptualize, to express myself, to think.  .  .  .  Every time I finish an essay or poem or piece of fiction, it feels as though I have faced down the insult."

Skloot considers himself foremost a poet, and poetry requires metaphor — brain leaps. I know that since the onset of my disability, I have been less able to write poetry, to access the part of my brain that can take such leaps. But I have wondered if, in some cases, certain disabilities affecting the brain may, as in Skloot's case, support their writing. For instance, the overwhelming majority of the poetry Breath & Shadow has received (and most of what we've published) is by people who identify as having psychiatric disabilities, such as depression, schizophrenia, or bipolar disorder. Certainly there is a history of celebrated poets — Sylvia Plath and Anne Sexton are two examples — having mental health struggles. I sometimes wonder if the effects of my neurological problems and medications having dulled my poetic power has the opposite for many of the people with mental health disabilities (many of whom are also on psychotropic medication) who send us work that features a sense of...

Disconnect/Escape

There is some overlap here with the confinement/isolation theme. But I have also noticed, particularly in the poems of people with mental health disabilities, a sense of disconnect in the writing: jumping, blurring, sliding, or drugged/drunkenness. In Araina Malloy's "In the Company of Drugs," there is a feeling of relentlessness, of the poem bearing down and carrying the reader off.

Among writers with physical disabilities, there seems to be a tendency towards escapist writing, including erotica (of which I have published a great deal) and speculative fiction (science fiction, fantasy, magical realism, and slipstream — genres that I am entering). I have also noticed my tendency — and that of friends with physical disabilities — to write stories about things, such as extreme sports, we couldn't possibly do in our real bodies. The best–selling writer of Seabiscuit, Laura Hillenbrand (who has one of the same disabilities as I do and is largely unable to leave her house), has been widely quoted as saying that a primary motivation in going through the grueling ordeal of writing the book was to escape from the physical and emotional pain caused by her illness.

Body–Centered–ness

Certainly in the discussions among people with disabilities, and this bleeds into our writing, there is a freedom and openness in talking about the body that I believe is not typical of nondisability culture. It is natural, when so much of our time and energy is focused on the body — on other people looking at our bodies, on being in hospitals or visiting doctors, on listing cognitive or muscular functions or dysfunctions on forms — to become more familiar with anatomical and medical jargon and often to being relaxed about body taboos. This "bodiness" seems to be a central aspect of disability culture writing. Breath & Shadow certainly receives many writings with piss, shit, and blood in them. It's important to note (and I'll say more about this below) that these are often passing references, or used in a straightforward way — not for shock value. That's where some of the paradox between bodiness and bawdiness comes in. On one hand, living with disability brings body awareness to the fore, so that references to body things — sex, blood, urine, death, surgery, etc. — are second nature. On the other hand, because humor is a major disability culture tool (see below) for coping with both oppression and our disabilities, we often use "dirty" or satiric humor in our writing.

Anger/Hopelessness

Breath & Shadow has published some very angry stuff, yet it represents just a fraction of the rageful and bitter writings we receive. To me, this makes sense. People with disabilities as a group (and usually individually) lack access to power. Often the only way to respond to great injustice and lack of control over your life is rage, or the flip side of the same coin, desperation and hopelessness. Anger is often, though not always, expressed through strong language (swear words) and depictions of violence. Publishing work that is violent or that uses a lot of cuss words has been a point of contention among some of the staff, as has sexual content. (See below for more on this issue.)

Humor

Breath & Shadow grew out of my "Sick Humor" columns for AbilityMaine, and I don't think that's just a coincidence. From my first entrance into disability culture, I've been surrounded by humor — usually irony and sarcasm. The first instance I remember was two women, one with spina bifida, the other with multiple sclerosis, joking about bladder problems. Humor, perhaps body humor in particular, is an essential part of disability culture, which asserts that disability/chronic illness is normal, not aberrant, and that most barriers are social, not medical. "Sick humor" is not a simple double entendre; people with disabilities rely on humor, often body/bawdy humor, to survive the frustrations, privations, and absurdities of dealing with a recalcitrant body and an even more uncooperative society. Satire reclaims a measure of power over the people and institutions whose hatefulness or ignorance we mock.

Other Themes

Because I don't want this editorial to be endless, I'll just list some other recurring themes I've noticed in submissions to Breath & Shadow:

• Poverty

• Stereotypes ("Supercrip" or "Poster Child")

• Animals (especially dogs and cats)

• Death

• Violence

• Fear and/or anxiety

• Grief

• Identification with other oppressed groups (gay people, women, people of color, etc.)

Where does Breath & Shadow draw the lines? What is "appropriate" for Breath & Shadow?

Every Breath & Shadow editor who reads a submission has to fill out a form evaluating it. One of the sections on the form says:

Having read Breath & Shadow and our missions and goals, do you think this piece has either literary merit and/or social/cultural merit from a disability rights/culture perspective? E.g., does it tell a story about disability that nobody else is telling? Does the style or form of the piece reflect the author's disability in a unique way? Does it knock you on your butt with the power and skill of the writing?

So, that's our general criteria. But that doesn't cover it all — not by a long shot. Breath & Shadow editors (including me, sometimes) have questioned whether certain piece are right for Breath & Shadow because of genre (We're not a science fiction magazine; will we lose readers if we publish too much SF?), because of "adult" content (How far are we willing to go with horror/violence or erotica/sex? How about swear words?), and, of course, about whether something is really relevant to Breath & Shadow's goals, mission, and audience (Can we start a disability studies section?).

A particularly difficult issue has been that of publishing material with violence in it, especially sexual violence. Of course, all publications must contend with issues of censorship, taste, and "where to draw the line," but we had additional concerns. Many disabilities are caused by physical assault (domestic violence is a major cause of head injury, for instance) or sexual abuse (incest and other forms of child abuse frequently result in psychiatric disabilities). So, we want our writers to be able to tell these stories, but also to honor the feelings of those who don't want to be retraumatized by reading them. In the end, I decided to err on the side of freedom and against censorship, hoping that those who begin to read material that disturbs them will simply stop and move on to another piece. For a behind–the–scenes look at how I arrived at the decision for how to treat submissions with sex, violence, or swears in them, please go to Breath & Shadow's Policy on "Adult" Content.

I have something to say about this article! I think there is more to defining "disability culture writing" than the themes you've laid out.

Good! Then you can participate in Part II of this essay. I've posted some questions below. Feel free to answer whichever one(s) you choose (or add your own) and send them to breathandshadow@aol.com. Please put "DCW:II" in the subject line. Also, let me know if it's OK to include your name with your comments. I'd like to get a dialogue going and compare notes. I will also be answering some of these questions myself about my own experience as a writer, as well as including URLs for other sites that discuss disability culture art.

• Did you agree or disagree with Sharon's editorial? Which parts?

• How does your experience of disability influence your writing in a practical way? In a creative way?

• If you are not disabled, do you think you can still participate in disability culture writing?

• How does being disabled from birth or childhood versus becoming disabled as an adult affect disability writing?

• How about differences in cognitive, physical, sensory, or emotional disability? Differences in types of disability within that group?

• Are there any disability experiences that are universal, or as close as universal as you can think of?

• Have you ever been enchanted by a writer, only to learn later that s/he has a disability and then wondered if that had something to do with why you loved her/his work? How about reading work that you were sure was by someone with or without a disability only to discover that you were wrong?

• Is disability the main aspect of your identity?

• Have we got to make a choice between being a "disability writer" or rejecting political identity?

I look forward to reading your answers to the question, "What is disability culture writing?" Together, I hope we will continue to reveal the beauty and importance of disability culture through writing, as well as create new definitions and forms of writing from the disability experience.