2006 - Vol. 3, Issue 6

This month we continue to explore the questions raised by last month's editorial about disability culture writing. The dialogue that ensued among certain readers and Breath & Shadow staff brought forth some interesting — and diverse — viewpoints and seemed worthy of being included in this month's editorial. Below, we endeavor to describe common themes in the writings of people with disabilities, explore the values and worldview of disability culture, and articulate the ways in which our disabilities have an impact on our writing, as individuals and as a social class. A list of websites on related topics is included at the bottom of this page. To read last month's editorial, click here or go to http://www.abilitymaine.org/breath/May06/sharon.html.

*   Do you agree or disagree with last month's editorial? Which parts?

Chris Kuell, Breath & Shadow staff: I enjoyed the thought–provoking editorial about disability culture in the last Breath & Shadow. I'm a newbie here and haven't been blind my whole life, so thinking about some of these issues is new for me. Also, since I lost my sight, I've been involved almost exclusively with blind people, and not people with other disabilities.

Michael Northen of Inglis House Poetry Workshop, subscriber: I think Sharon's editorial is an important foray into the subject of disability culture writing. [But,] in the list of Common Themes, she did not mention sexuality. I know that is implicit in "body–centered–ness" and that it is not manifest in all disability writing, but then neither is humor or escape, so perhaps it should be another in the list of commonalities.

[Also,] Sharon equated disability culture and disability aesthetic. I am not so sure the two are one and the same (it seems to me that disability culture is broader and has more of a materiality about it), so I will stick with the term disability aesthetic. I think of an essay by Steve Brown of a couple years back. "What is Disability Art?" in which he said that when he is writing about disabilities issues then he is a disability writer, but when he is simply writing about anything then he is a writer with a disability. That is a nice, clean bifurcation and certainly has an appeal, but to me, thinking strictly in terms of subject matter does not really get at the problem of whether or not there is a disability aesthetic and, in my opinion, if there is one, it is probably one that can not be tied to subject matter. I'll give an example. Poet Dan Simpson, who is blind, tells the story of his work under the tutelage of well–known poet Molly Peacock. Peacock asked him one day why he spaced all of his poems so that the lines were more or less even. Simpson replied that in his work at the University of Pennsylvania, his mentors felt that lines the same length gave it a certain visual appeal and he had just sort followed their practice. Peacock's response was, yes, but you don't write by sight, you write by sound, think in terms of breath — what do you care how the lines look on the page! As a result, Simpson began to develop his own sense of how poetry should feel. It was an aesthetic that emanated from his experience as blind writer, but it transcended any subject matter.

I think that poet Jim Ferris makes a similar case in a very original way in his seminal essay, "The Enjambed Body," (Editor's note: See the bottom of this page for links to other sites on disability culture writing, including one for "The Enjambed Body") in which he translated the cadence of his physical walk (he has one leg shorter than the other) into a case for the use of irregular meter in his poems. In this way his poems have their origin in the body but manifest themselves in style rather than subject (though, of course, the two aren't mutually exclusive).

Catherine Frazee, subscriber: Great editorial in the may issue of Breath & Shadow — congratulations!

John Allen, Breath & Shadow staff: I find myself in general agreement with Sharon's editorial, although I do not anticipate a major change in the nature of the submissions we receive at Breath & Shadow. Disability does not restrict itself to everyday life but will manifest in attempts at publication and coteries of all kinds.

*   Is the goal of "disability arts" or disability culture to reflect back to us (ourselves) the truth and beauty of this community?

John Allen: As far as publications like Breath & Shadow go, I would say yes to this question. Our affinity with one another is like a convex mirror reflected in our creativity and nonfiction, and we need this desperately. We need, however, to reassess what the "truth and beauty" precisely is. What are we going to do about the people who do not understand disability? What is the truth we tell them, as opposed to the truth we we know and share, that of limitation? And as for the beauty, do we have enough faith in ourselves, for example, to make a severely physically disabled individual somehow heroic to the public? An aesthetic needs to be created.

Chris Kuell: I think, if done properly, disability art and culture can have a positive impact on all who are ready to hear/receive it. Writing (essays, stories, poems) can certainly have an impact on disabled readers, make them think, help provide positive ideas o;e.g., "If they can, maybe I can too") and help readers relate. It can also help to illuminate those without disabilities, or people who aren't influenced directly by people with disabilities. Unfortunately, too few of these folks are exposed to disability culture. I can use myself as an example. Nine years ago, I had never met a blind person in my life. I might have seen a person with a long white cane or a guide dog, but if I did, I didn't even register it. I shared societal misconceptions about blindness and figured my life was as good as over when I went blind. I've come a long way since then.

However, this is tricky territory. If I show someone a story about a blind guy doing a normal day's work, going home to the family, cracking a beer and then show them another story about a blind guy who is angry, who dwells on the things he can't do, the pain he feels about being outside "normal" society, how isolated it can be at times... which story do you think they will remember?

*   What are the values and worldview of disability culture?

Erika Jahneke, Breath & Shadow staff: Are we sure we're united enough to have one disability culture? Because I'm not.

Sharon Wachsler, Breath & Shadow Editor: Erika, interesting that you should say that because I came across an intriguing quote on this issue in "A Poetics of Disability":

As philosopher Susan Wendell points out in her pioneering work, Rejected Bodies, aside from a common label, there is little that all persons who are considered disabled can be said to share. Rather than being defined by what they are, individuals with disabilities, tend to be defined by what they are not — that mythical average person. Because of this, it is difficult to say that there is a disabilities point of view. Wendell believes, nevertheless, that there are perspectives that the disabilities community can lend to the mainstream merely by virtue of their having lived through experiences that by definition, the non–disabled have not lived through.

Abigail Astor, Breath & Shadow staff: I love the Susan Wendell quote. That "there are perspectives the disabilities community can lend to the mainstream merely by virtue of their having lived through experiences that by definition, the non–disabled have not lived through" applies to every community, be it gays, holocaust survivors, etc. We all belong to various communities, and we are all individuals. I myself am a lesbian and suffer from serious psychiatric disabilities and less serious physical disabilities, yet I have never felt part of a "community" relating to these categories. If anything, I have felt more alienated because I have not really found a niche for myself even within these groups of which I am supposedly a member. The only significance for me of even defining any community (particularly those whose members are persecuted) is that there is power in numbers. Members of "the mainstream" need to know that there are gays and people with disabilities (and any other community) and that we have voices and rights.

John Allen: Creating a strong culture of disability that includes literature, creative nonfiction, and poetry seems to me a daunting task and a hard goal to shoulder. I do not see a coherent worldview of the disabled in current times. We are misrepresented at every turn. Nor do I see a very definite value system going on at the moment. I think the disabled are still ashamed of their situation, as once some races and ethnicities were before the injustice of their situation was recognized by society at large.

This is really relative to the individual and not a question that can be answered without abstraction, but if I were to answer it as an individual suffering from various disabilities, I would say that disabled individuals need to realize how important empathy is, for one. Since there is only a kind of saccharine and meaningless mediated sympathy for us right now, we need to make a point of recognizing one another as comrades in the day–to–day struggle of merely coping. In other words, to make the simple values of sympathy and understanding a paramount part of our interactions with one another. No one else is going to. Also, just as other minorities and those alienated from society idealize their plight to the point where it generates attention, we would do well to try this, too; romanticizing our situation is not something we should be above. If we think that there is enough compassion in society to do this without our own effort, we are deluded. Forget it.

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

Chris Kuell: I think it is possible, but if one is to avoid the misconceived stereotypes, they should have at least a good deal of exposure. An excellent example is the book, The Curious Incident of the Dog in the Nighttime, which is told first–person from the perspective of a boy with autism. I thought it was brilliant.

Michael Northen: I totally support Breath & Shadow's position of only accepting work from writers with disabilities. (It leaves me out of the discourse — but that is not really the issue.) Nevertheless, as Michel Foucault always pointed out, one of the interesting things when the power brokers draw lines around a discourse is to see who is allowed to speak and who is not. Certainly, no white writer is going to understand the African–American experience as well as a black writer, and it makes sense in an anthology of African–American writers to limit the voices you are going to include to Americans of African descent. On the other hand, if the discourse of war writing were limited only to writers who had actually fought on the battlefield, then we would never have had The Red Badge of Courage, since Stephen Crane never saw a battle. Yet, even those who fought in the Civil War admitted his book was the best novel about the war ever written. So, as Robert Frost said in his ubiquitously quoted poem, "Mending Wall":

Before I built a wall I'd ask to know
What I was walling in or walling out,
And to whom I was like to give offense.
Something there is that doesn't love a wall,
That wants it down.

You have to consider who you are walling in and walling out.

John Allen: Yes — anyone worthy of being considered creative has at one time or another given voice to a period of depression, creative aridity, etc., and has written or created in whatever medium they work, about these periods. William Styron, Patty Duke, Kay Redfield Jamison, Muhammad Ali — all extraordinarily accomplished people — have expressed in one way or another their experiences of disability. Now with the advent of a more empirical psychiatry, we are finding out that some of the most illustrious creative geniuses suffered grievously from mental ailments that were not properly treated or known about at the time of their lives.

Sharon Wachsler: I think people without disabilities can and do participate in disability culture writing, but even someone who has done their utmost to understand the disability perspective, including people who are the family members or friends of people with disabilities, are not going to "get it" the way someone living inside disability does. I worked at a disability agency, had family and friends with disabilities, and considered myself part of the disability rights movement and was writing about disability, both creatively and for work, regularly. Yet, when I got sick, I realized the difference between knowing disability intellectually and knowing it in my mind and body. How did this affect my creative work?

Before I became disabled, I wrote short stories wherein the disabled protagonists underwent a change in their disability. They did not get cured, but they either improved in function (such as a stroke survivor home from rehab) or they were losing function (such as an elderly blind woman whose remaining sight was deteriorating). Further, the characters in both my poems and stories about disability were angry. They had other emotions — they might also be grief–stricken, determined, proud, or confused — but anger was always present. Tellingly, I always wrote from the third–person perspective.

Here is the opening paragraph of one such story — a stroke survivor, just returned home, determined to make the latkes (potato pancakes for the Jewish holiday, Chanukah) she missed during her time in the hospital:

Rachel peels back the layers. Just the outer one and the second, which are thin and dry. Then, using her right hand, she pushes the onion across the wooden board until it rests against her left fist, her fingers curled, nails trimmed. The last dregs of sunlight sift through the kitchen windows; she has maybe an hour–and–a–half. Will that be time enough to get everything ready? She wishes she could pick up the pace. She did not know, before, that you could lose the ability to hurry. There were a lot of things she didn't know you could lose.

I now see how, in trying so hard to reject certain stereotypes about people with disabilities, I was using stereotypic opposites instead. To avoid the pitfalls of the passive, pathetic crip, I latched onto the angry crip or the determined crip. I also made disability the hill to climb; disability was never the static state, the backdrop — it was the center of a problem. Michael Northen's comments on traditional narratives at the bottom of this editorial (under "Other Comments?") deconstructs this tendency beautifully.

However, when I became disabled, all my disability–related creative writing immediately switched to first–person perspective. Another change was that in the first couple of years of my illness, my poetry focused on becoming disabled, but since "digesting" life with disability, my disabled characters are always already disabled when the story or poem begins and, with rare exceptions, the disability is not what changes the characters — other events are the catalysts. This is true even though most of my fictional characters have different disabilities than mine. In other words, my poems and stories present disability as a given — it does not need to be overcome or surrendered to, it is simply there.

An example of this is a very short story I wrote about a relationship between two women with cancer. It grew intuitively from my own illness experience — even though I have very little intimate knowledge of cancer. The opening lines for the piece came to me when I was up at night, sick, like so many nights, and I believe that psychic state bleeds into the piece — that tone of just getting through. Here is the opening paragraph:

When your life is at stake, everyone starts to look good, or, at least, doable. Sex becomes a means of survival. Everything does: vitamins, acupuncture, walking the dogs. You do it and you know it's at least half as important as the amputations and radiation. I fuck, therefore I am.

The immediacy, intimacy, and bluntness are quite different from the previous story, which now feels distant, sanitized, and disembodied.

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

Chris Kuell: I think going blind at thirty–five allows me to write more like a sighted guy. The internet is great in the sense that you can hide how you look, and people only get to see what's going on in your head. I have a sighted memory of how many things look, and even as those fade I try to add texture and other sensory input in my prose.

I went to a writer's workshop in May, and a short story I submitted was chosen for workshopping. The initial feedback was, "How could a blind guy have written this?" But, as we talked, and it became apparent I was the author, I hope I was able to change the other people's ideas about blindness just a little bit. After all, isn't fiction writing all about pretending you are someone you're not?

John Allen: As with any experience we carry throughout life, disability that is recognized and/or known early on will provide a more comprehensive knowledge that we would otherwise have if the disability is noted later on. This is not to take away from those who only feel the brunt of their disability in early adulthood, but it is simple logic that a lifetime of ailment forces an individual to learn coping skills, experiential truths, etc., that a person who comes to these realizations later will simply not have.

Sharon Wachsler: I've already addressed some of the ways in which my writing changed when I went from nondisabled to disabled. In terms of what I've seen in others' work, I notice several differences. Obviously each person, and their writing, is unique, but these are the general trends I've observed.

One is that people with disabilities acquired as adults seem to have more outrage, and their writing reflects this intense anger and frustration. I believe this is because most nondisabled people grow up with a greater sense of entitlement (including entitlement to freedom and independence) than most disabled people (all other factors, such as race, sex, class, etc., being equal). Therefore, when they suddenly lose status, financial security, independence, or any of the host of losses that usually come along with disability in our culture, they are keenly aware that it wasn't this way before, and they are incensed.

People who have grown up with a disability seem to produce writing that both takes disability as a given and also that pleads for understanding or respect from the (nondisabled) reader, rather than trying to demand it, as those with acquired disabilities do. Paradoxically, I also read more pieces that evince "disability pride" from those with lifelong disabilities than those without. Since disability is part of their essence from Day One, they cannot imagine life without it, nor would they want to.

In general, both groups exhibit a great deal of shame, but most of those who write about having become disabled tend to mix it with bitterness, while those who have only known oppression, write with a resigned, sometimes ground–down weariness, seeking equality but not expecting it.

*   How do differences in cognitive, physical, sensory, or emotional disabilities affect disability writing? What about differences in types of disability within a group?

Chris Kuell: Everybody has their own story to tell, and if done well, will help illuminate something about the human condition.

Michael Northen: As Sharon's editorial points out, one of the problems with trying to come up with a disability aesthetic is that disability is not only an umbrella category often defined in a binary relationship to "normality" by what it is not, but it is a permeable category. I'm sure as an editor with a policy of accepting only the work of people with disabilities, she is faced with writers who ask the question, "Am I disabled enough for you?" (Editor's note: Yes, I do.)

I do think that one of the obvious functions in all literary fields of writers with disabilities is to ask what the lived experience of disability can contribute beyond simply verisimilitude to the literary field. Just what that contribution is, is what is difficult to tease out and it will take those very perceptions of writers like poets Dan Simpson and Jim Ferris to discover just what it is. At the recent Society for Disability Studies conference in Bethesda, Maryland, Katie Aubrecht of York University in Ontario, suggested that this is something that — at least in the realm of narrative life writing — may have to be accomplished on an individual basis due to the multifaceted nature of disability. This, of course, flies in the face of what disability studies theorists like David Mitchell and Sharon Snyder propose. It will be interesting down the road to see what finally emerges, but I think that it is great how an editorial like Sharon [Wachsler]'s stirs the waters.

Sharon Wachsler: I cannot say whether submissions to Breath & Shadow are representative or not, nor exactly what this difference signifies, but most poetry submissions we receive are from people with mental health disabilities, while most fiction submissions are from people with physical disabilities. I haven't noticed a major difference in types of submissions in terms of cognitive disabilities; we may receive more poetry, but that may not be meaningful since we receive more poetry submissions than all other submissions (fiction, nonfiction, etc.) combined.

I know that in my own case, having multiple disabilities, including cognitive and physical impairments, affects the content, style, and form of my writing. Although it is sometimes difficult to tease apart which aspects of my disabilities are showing themselves in a given way, there are a few traceable effects. Having multiple chemical sensitivity (MCS) means being extremely isolated — far beyond comprehensibility to those without it. I very rarely leave the house, and with the exception of my personal assistants (and recently, my girlfriend), I've been alone almost all the time for twelve years. Thus, my relationships tend to be "virtual," i.e., exclusively or primarily email or phone. I believe this is part of what has led me into slipstream writing — a form of science fiction, it is writing of the weird, the post–postmodern, the disconnected.

One of the main symptoms of one of my disabilities, chronic fatigue immune dysfunction syndrome, is cognitive impairment. This brain damage asserts itself in a variety of often unpredictable ways: trouble finding words, short–term memory loss, difficulty reading, and the inability to focus if I'm presented with too much sensory stimulation. The flip side of this coin is that when I can focus, I become completely absorbed. I am super–attuned to various sensory conditions. I can tell what people are eating over the phone. I can smell things other people can't and identify the smell (hairspray versus fabric softener, for instance).

The way all this translates into my writing is complex. On a practical level, it's hard for me to write unless all the conditions are just so: I need to be at home, by myself, in total quiet, and feeling as well as my condition allows. I tend to write in the middle of the night or at odd hours when my personal assistants are not here. But, when I'm writing well, my intimate knowledge of my environment and my ability to microfocus mean that I can write with intricate detail.

This hermetic life leads to stories with laser–beam intensity on very few characters (usually only one or two) who are out of synch with the rest of the human or current world in some way, although some aspect of the natural world is often present. These characters are sometimes disabled and sometimes not, but I believe my shadowland disability sensibility plays out in the nondisability stories because of the components outlined above. Indeed, I have definitely noticed that other writers with MCS focus on their kinship with the earth or natural world and their analogous alienation from humankind.

One of my stories, "Heather," has no overt disability references, yet it carries the themes of isolation, natural–world influence (both benign and destructive), and desertion/loss:

I met Heather in a storm. The rain was driving so hard into my face that I couldn't see the ground and slipped off the sidewalk, wrenching my ankle. The wind flipped my umbrella inside out; it looked like a sea shell on a stick. The gusts crashing against me practically lifted me off my feet. "Isn't this great?" she screamed at me, her face shiny with sleet and melting hair gel.  .  .  .

We never made it to fall. Heather found a job sliming fish on a tanker in Alaska. Ice floes, polar fleece, six months of sunless winter. How could I compete with that? She packed her long underwear, her lined gloves and heavy boots, her ski mask, and lunged for the door.

"You're missing the best part," I sobbed, my hands around her thick ankles. "The foliage, Heather, the foliage.  .  .  .  The crisp air. The apple picking.  .  .  ." But I could see through my tears that Heather was gone. She was already on that fish–guts strewn deck, her lips chapped and raw, icicles forming on her nose hair. What did she need with me and my maple–smoked ham?

It was a dry, bald autumn. The apples were bitter.  .  .  .  I still had the dachshund. You can't keep a dog on a boat with thirty men and a ton of dying fish. I renamed him Heather. At night I'd sit on the floor in the living room, watching the Weather Channel until two or three in the morning. Leaning against the couch, Spot purring in my ear, Heather the dog curled around one of my feet, I glanced out the window to see what it was doing. I waited for the chill to settle in.

The various effects of my disabilities, combined, frequently result in writing that is dreamlike, fractured, or otherwise unreal, wherein my protagonists are alone or being left behind through death or desertion, and wherein some natural world element acts as an anchor or transformative force. (I think the real losses and desertions I've suffered as a result of ableism also feed the desertion/alienation aspect.) Here, for instance, is the opening of a short story that, while there is no overt disability content, displays these themes:

I wake up, my senses not yet sensible. It's been over a year since your side of the bed was warm, but my brain creates what my orphaned body craves. My glasses off, I can almost see you, blurred beside me  .  .  .  and I wonder at the magic in my brain that turns sunlight into a vision of you.

This is not to say that all writers with the same disabilities as me experience the same effects on their work, but I base my conclusions on my understanding of the lives of the many people I know with these illnesses, along with their writings and mine.

John Allen: There is a significant difference between a person who suffers, for example, from a grave mental illness and a person who is paralyzed physically. Both are disabled, but the nature and form of their disabilities seem on the surface to be so radically different that there is no comparison. This is both true and not true. If mental illness reaches a certain point it can be as limiting and disturbing to daily life as being a wheelchair user. Also, there is the "invisibility" factor: people will not necessarily have as firm a grip on the person with the mental illness as the person in a wheelchair, because it is not so overt. A cognitive disability can be worse than any of these things; others may mistake the person for "dumb" or incapable of following simple directions that are immediately understandable to others until they know about the nature of cognitive disability. Even when the disability becomes known, they may still persist in this erroneous and hurtful way of thinking.

What all three have in common is disaffection. This is not rare in artists and writers, but in the case of the artist with a serious case of any of these three, alienation will in all likelihood be a good part of their experience.

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

Chris Kuell: I think everyone has been treated as less than, or as a child might be treated. We are looked at as inferior by most, however they try to hide it.

John Allen: Again, I would cite alienation as the most common experience the disabled share. No matter how much "progress" people make in understanding cognitive, sensory, emotional, or physical disabilities, we remain outcasts of a kind. And I think there is ample evidence in the writings/art of the disabled to support this.

Paul Kahn, Breath & Shadow staff: An oppressive society, which scorns us for our differences, which tells us that we are unworthy of love and incapable of living productive, happy lives. The world keeps telling us we're flawed, because we need assistance. So, we strive to be considered whole and equal. In our art — beautiful, courageous and wise — we achieve that wholeness in a way that no one can deny or surpass.

Sharon Wachsler: I echo what has been said so far. I would also add isolation as a universal experience for people with disabilities that comes through in our writings. People with recognized disabilities have historically been physically separated (segregated schools, institutionalization, forced hospitalization, etc.) and today many people continue to be physically isolated — trapped in nursing homes or in inaccessible homes — or, as in cases like mine, too sick to socialize or kept at home because society at large is inaccessible. Even some steps that have been taken to lessen segregation for some people with disabilities have, in other circumstances, increased isolation. One example is the Deaf child who is "mainstreamed" into a hearing environment where s/he lacks communication access and is isolated from other signing Deaf peers. Where physical barriers are not in the way, attitudinal barriers isolate and shame people with emotional, cognitive, or learning disabilities.

Further, unlike most other oppressed groups (an exception being the gay/lesbian/bisexual/transgendered community), people with disabilities usually do not grow up in our subculture — i.e., our parents are usually not disabled — so we often suffer discrimination at home from family and friends, too.

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

Chris Kuell: This could be an essay in itself. Obviously, my disability has changed me in many profound ways. I'm more empathetic, yet I'm simultaneously angry at the shaft disabled people are given every day. These can't help but come across in my writing and sometimes act as a catalyst. In my own writing, I tend not to dwell on the dark sides of disability, since I don't see that propelling our movement forward.

Sharon Wachsler: It affects my work profoundly. In terms of practical matters, my disability prevents me from writing a great deal of the time, although it's hard for people who aren't intimately familiar with me and my life to understand this.

My cognitive impairment means that sometimes I have trouble reading and remembering or understanding what I have read, including my own writing! This can be very embarrassing. I once wrote a long paper about the treatment of people with MCS in American society, and when I went to edit it, I couldn't remember what I'd written in the previous five pages. So, I rely a lot on other people to read my work for me and give me feedback. It's taken me several years to write sixty pages of the novel I'm currently working on, and I don't know if I'll be able to finish it because I don't know if I'll be able to remember my plot!

I mostly try to write short pieces, in part because it's too hard for me to keep track of what's happened earlier and in part because of cognitive and energy deficits. For, not only do I need to remember what's happening in my story or poem, I also need to maintain the tone, style, or other literary devices I'm using in that piece. As a result, at least one–third to one–half of the stories I've published are 1000 words or less.

Since it can be hard to know what part(s) of my mind I'll be able to access on a given day, I have to wait until my mind is working that way and grab that opportunity. For instance, most of the time I have trouble accessing the part of my brain that allows me to create the sort of metaphors and "leaps" that are required for poetry. The same can be true for writing fiction — if I don't get an entire first draft done in one sitting, it may be very hard for me to recapture the voice of the piece. The cancer story I mentioned earlier is an example; I wrote it all during the middle of the night and fell asleep at dawn. I think such constraints might be important to the idea of disability shadowland writing — the size of the piece and the way it must be written in a rush.

I have also found that when a writer's life is limited by disability itself and/or by barriers to the rest of the world, it's natural for us to delve more deeply into those topics that are either (1) within our narrow reach/view — because that is what we are intimately familiar with — or (2) far outside our reach or view — because it is a way to escape our boundaries.

The first instance leads me to write a lot about my disability and my body, who or what is inside my house (such as my dogs), and what my friends tell me; these sources of material are always available. On the other hand, if something is totally off limits to me now, but I can research or remember it well enough to bring it to life on the page, I often take it on as a way of escaping my limitations (and even perhaps as a subconscious "So there!" to the reading public to show that I am more than just "a disability writer"). For instance, I've always had an interest in writing about sexuality and the body, but after I became disabled, my body and my relationship to it changed dramatically. I was denied most physical pleasures: hugs, exercise, sex, and even enjoyment of eating because my multiple food allergies require a bland, restricted diet. Now most of my poems and short stories involve food and/or sex, either as subjects or as metaphors.

I'm not the only disabled writer using literary escapism. I've noticed a big overlap among writers of erotica and speculative fiction (science fiction, fantasy, slipstream, and magical realism), and that many writers in both camps, especially speculative fiction, are disabled. It's always seemed to me that the people most drawn to SF are people who are outcasts and therefore isolated in some way: nerds, gay people, people with disabilities. Interestingly, despite the numbers of people with disabilities among professional erotica writers, we largely publish stories with nondisabled characters. Whether this can be attributed to escapism or to ableist publishing practices, I'm not sure. My guess is that it is both. Certainly in my case it is.

Throughout this and the previous editorial I have tried to describe a certain disability sensibility that I have called the shadowland. I know it exists in my writing, yet it's very slippery to describe. A possible example to illustrate shadowland in my work is how I've unconsciously written my characters to follow my own disability "timeline." I became disabled at twenty–five. If I write a short story in which the characters are definitely nondisabled, they are always young — in college or their early twenties or younger. But if they are disabled, they can be any age but tend to be older, often around my age (thirty–six).

Another similar pattern in my work is that my nondisabled/young character stories tend to have some element of "purity" or "innocence" in them, whereas when I have a story with characters with disabilities, it usually contains more conflict. It's grittier, harsher, or sometimes has a dystopic quality. I think what comes out in these stories is that living with disability is not tragic, but it's hard, and that "ground down, but hanging in" or "disability happens" reality comes through even when the piece has a dreamlike quality — on the verge of slipstream.

Further, my fiction with disabled characters tends not to be funny, while my nondisabled character stories often contain a lot of humor. It's intriguing to me to notice this about my writing because when I write nonfiction — my humor columns that are primarily about life with disability — I am employing a very strong disability sensibility — disability and humor!

*   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?

John Allen: As a very young teen, probably fourteen or so, I became entranced by the poetry of Jean Nicholas Arthur Rimbaud (1854–1891). I wanted to memorize his "Illuminations," which I found life–changing, and everything else he had ever written. His visionary work spoke directly to me, as did his insistence on rebellion. Everything about the work spoke directly to me. I didn't know much about his life until I read a biography and was pretty surprised at his sometimes psychotic, fanatical, cruel, and tormented behavior. A complete misanthrope, it has been determined that Rimbaud was probably suffering from more than one mental illness. The severity of his untreated disability competes even with a guy like Van Gogh.

As for the other question, I have always loved the weird fiction of Howard Phillips Lovecraft (1890–1937). The darkness and forbidding nature of his work, along with the particularly disturbed cosmos he created so convincingly within it, made me imagine more than a few times that I was reading the writings of a very well–read madman. I have talked to others who had the same perception when reading Lovecraft's fiction. After finishing the entirety of his work and the stories by legions of artists inspired by him, I read his biography. He was eccentric, but perfectly rational and not disabled in any way at all. He is an ominous figure only in literature but not in life.

Sharon Wachsler: When I first fell ill I went on a jag of reading stories of imprisonment, such as Susanna Kaysen's Girl, Interrupted and Marge Piercy's Woman on the Edge of Time. I felt so imprisoned by my illness — going months without leaving my apartment — that I found these stories somehow comforting. Piercy's book made me a fan of her novels, including her science fiction, which was a new realm to me. Even though I set forth to read anything I could by Piercy, it never occurred to me to question why I liked her so much, other than the quality of her writing and my interest in her topics. I didn't wonder what we might have in common other than being Jewish feminists living in Massachusetts. However, when recently I listened to her memoir, Sleeping with Cats, I discovered that — although she does not identify as disabled — Piercy has had many medical problems, including chronic pain and a permanent visual impairment. She also has suffered through brutalities — severe beatings and grinding poverty — I have not, but which add a layer to her writing that I think resonates with me as a person with chronic illness in this culture — pain, confinement, shame, etc. When I read about her health and visual problems, I had a small, "Aha!" moment.

*   Is disability the main aspect of your identity?

Sharon Wachsler: I believe it is, somewhat against my wishes, because there are so many parts of being disabled that are aggravating, frustrating, or painful for me. Identity is always shifting, of course. My identity has included many aspects that turned out to be transitory (student, self–defense teacher, practitioner of meditation) and others that are with me for life (Jewish, lesbian, woman), and as circumstances change, so does how strongly a certain part of my identity defines me. For twelve years, disability has consumed or influenced every aspect of my life. If I thought I knew oppression as a nondisabled lesbian — when I was physically threatened or told I was a "genetic abnormality" — it was nothing compared to the erasure, alienation, and other social and personal all–encompassing effects of my disability on my mind, body, and emotions. It affects almost every decision I make, every day, on a minute level.

In my writing, however, my identities march forth: my short stories are always about lesbians, my poetry is usually about my illness, and my nonfiction is generally about disability.

Chris Kuell: I think it is inseparable. I still maintain long friendships from before I went blind, but basically consider that a different phase of my life. I have a line of "before blindness" and "after blindness." I've met folks who want to be referred to as a person who happens to be blind, and that's cool. But me — I'm a blind guy, and I would be kidding anyone if I said otherwise.

John Allen: Absolutely not. I don't advertise my disabilities and only make them known when a situation absolutely calls for it, and even then I'm a little reluctant to do so. I admire people who can tell another person straight out that they are disabled without it damaging their pride, but I am not one of them.

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

John Allen: I don't think so. One can see a direct parallel between the experiences of the economically disadvantaged (the "proletariat") and the disabled. I think the two go hand–in–hand. I'd like to see, for example, more people who use their disability to empathize with those in Iraq and other unjust situations. The two coagulate well rather than differ in many ways.

Chris Kuell: No. I've had moderate success wearing both hats. As I mentioned above, when writing fiction or political essays, there is no way anyone could ever tell I was disabled because all they are exposed to is a stream of my thoughts. Yet, I can also wear my disability hat and work on a piece that I hope will prove inspiring to my intended audience.

Paul Kahn: I was recently asked to write something about the literature of disability. Does it embody a particular sensibility? And, if so, how can we categorize that sensibility? My first impulse was to say no: there's nothing different about us. But then I realized that this was a conditioned, reflexive response against ableism]. A more considered response would be to say that we and, therefore, our arts are not fundamentally different, but we do embody in a more dramatic way the universal human condition.

All human beings are helpless against the mysterious, invisible power of time to bring decline and death. But our disabled bodies are apt to decline faster. We have greater awareness of the reality of death and the fleeting nature of life's pleasures. Therefore, our literature mourns loss and celebrates everyday moments with a passionate intensity. In Harriet McBryde Johnson's book, Too Late to Die Young, she eloquently describes tooling confidently through the familiar streets of her home city Charleston, South Carolina in her motorized wheelchair. It's a quintessentially disabled sensibility to relish this simple pleasure of motion so deeply. And it's also a quintessentially disabled sensibility to write about it in a proud, defiant challenge to everyone who thinks our lives are filled only with suffering.

When we do write about the darker side of our experience — our encounters with illness and pain — we write honestly and matter–of–factly. So, an entire issue of Breath & Shadow can be devoted to the theme of mortality and yet be full of love for life and humor.

All human beings, also, are ultimately alone. But our sense of isolation is exaggerated by society's prejudice and its concrete expression in physical barriers. Therefore, our literature celebrates the community that we find with each other and the preciousness of love. Mike Ervin fortifies our bonds with insider jokes about how supposedly superior nondisabled people really envy us for privileges like handicapped parking. And poet Dan Wilkins writes beautifully in "How?" of his child's unconditional love. Sure, other people have written about the joys of parenthood. But it's a quintessentially disabled sensibility to layer that joy with the poignant knowledge that in the outside world there are people who devalue him simply because of his disability.

While we are ultimately alone, all human beings are also interdependent. But our reliance on human and technological support is more pervasive. So, our literature dispenses with the hubris of false independence and instead focuses on our relationships with the people and things that help us function. Disability magazines like New Mobility are full of reasoned but ultimately celebratory writing about the latest models of wheelchairs. It's a quintessentially disabled sensibility to revel in these sleek, life enhancing machines that others unfortunately view as symbols of decrepitude and dependence.

*   Any other comments?

Michael Northen: I have been working pretty closely with disability life writing narratives. Since narratives are cultural constructions and we inherit our construction from main stream society — automatically built into fiction is the concept of normal state, problem, overcoming problem, resolution. This built–in structure tends to push people with disabilities who are writing life narratives/autobiographies into either adopting that structure and focusing on the disability as a problem to be overcome or into adopting alternative narrative methods. Kenny Fries and Stephen Kuusisto are great examples of how writers whose disability is their "normal state" work around this.

Websites that Explore Disability Culture Writing and Related Topics

dao (Disability Arts Online)
http://www.disabilityarts.com/
Online disability arts publication from the United Kingdom. Includes interviews, essays, graphics, relating to all forms (dance, drama, sculpture, photography, writing, etc.) of disability and Deaf arts.

Dispoet
http://dispoet.blogspot.com
This site focuses primarily on disability and poetry. However, it also has links, articles, a bulletin board, and more relating not just to disability and poetry, but to disability studies, conferences, publications, reviews, and more that relates to disability culture. Several fascinating articles have been published on Dispoet, including "Autism and Poetry," "What Is Disability Art?" and "A Poetics of Disability" — http://dispoet.blogspot.com/2005/05/poetics–of–disability.html

"Toward A Crippled Poetics" — http://dispoet.blogspot.com/2005/05/toward–crippled–poetics.html

"The Enjambed Body: A Step Toward a Crippled Poetics," a groundbreaking essay by Jim Ferris — http://www.poems.com/essaferr.htm

Inglis House Poetry Workshop
http://www.geocities.com/IHPoetry/
Residence in Pennsylvania for people with severe physical disabilities. Holds an annual disability–themed poetry contest and publishes a chapbook of the winners.

Institute on Disability Culture
http://www.dimenet.com/disculture/
The Institute's mission is "to promote pride in the history, activities, and cultural identity of individuals with disabilities throughout the world. The purpose of this site is to provide information about disability culture and to share examples of our culture. This site is currently entirely text–based." Also a place to sign up for founder Steven Brown's "Manifesto" newsletter.

National Disability Arts Forum
http://www.ndaf.org/menue.html
Online publication from the United Kingdom about disability arts. Includes artists organizations and resources and links to disabled artists and their work.

Twenty–two Books on Disability
http://www.ralphmag.org/CH/disability.html
L. W. Milam has compiled a list of significant disability–related books, along with comments on each. Milam's intro states, "Writing on disability is like fine bone china — it demands a certain delicacy. Many disabled writers (or those who choose to write on our behalf) collapse into fake jollity, or bathos — or employ a style that is icy, dispossessed, separated from the heart. A worthy writer must show us the good as well as the ghastlies — infections, aging, the unexamined hostility of society — without getting maudlin, without descending into fake heroics, without the chill of unrelieved anger."

Note: Paul Kahn's comments are part of an essay, "The Disabled Sensibility," that will be published in On the Outskirts, a chapbook by the Inglis House Poetry Workshop, August 2006.