What Does “Disabled” Mean? (Review, Speculations & Personal Considerations)

Generally I have been skeptical of single-issue literary magazines.1 Focusing narrowly on a single aesthetic or political subject runs the risk of distorting the ways in which the chosen subject or theme fits into the broader social & artistic movements of the time. In short, I am skeptical about identity politics, whether in civil society or in the arts. That said, I’ve just been reading the online literary magazine Deaf Poets Society & have been fascinated by its contents, which consist of poetry, fiction, non-fiction, visual art & interviews. That bears somehow on “disability.” As far as I can tell from reading the biographical notes, all of the contributors identify as disabled; but the range of approaches the contributors take to the representation of disability at least partly assuages my skepticism about such undertakings.

After all, quality will out. The writing & editing presented in Deaf Poets Society is mostly of a very high quality, though I think a couple of the prose pieces would have benefitted from more editing, to make them a bit shorter. The format of the magazine is straightforward & easily readable online, though there is also a PDF file of the journal that can be downloaded to read offline, print out, or move to another device.

At a time in our literary history when most literary journals do not publish author photos, Deaf Poets insists on them; what’s more, they ask each writer they publish to write a description of the photograph–along with a biographical note. Much of the content is framed  by the rhetoric of the first person point of view,2 with all the risks & benefits of taking such a point of view.

As I was reading unsystematically through the magazine, it dawned on me rather suddenly that I am disabled. But as soon as I recognized this startling state of affairs, I began to wonder whether it was so. Does the colostomy bag hanging on the left side of my abdomen make me disabled–or the stage IV cancer in my hip (& spine & lungs) that prevent me from walking without a walker? Do these make me a member of the club? If so, I am a recent inductee. I spent all my life until six months ago among the “abled.” Would the blind or the deaf see me as disabled, or merely ill? How much less claim do I have on the term than someone, say, blind from birth? (Certainly, I have fewer of the skills of being disabled–if I am!–than the person who has had his or her disability from birth.)

I mean no disrespect by calling disabled people a club–I genuinely want to know where to draw the line, which, when you think about it, is not obvious.3  It is not a club very many people would willingly join.4 But there are deaf people, for instance, who see their deafness, not as a disability, but as falling within the range of physical or psychological  differences that characterize human beings.5

In any case, using one filter–that of the “classical disabilities” such as blindness, deafness, or birth defects6 affecting mobility, etc.–I am not disabled; but using a functional definition, I fall within the definition of disabled. The chronically ill, as well as those with terminal diagnoses, might well feel as if their condition has been visited upon them by fate or by a cruel deity; they might feel both nostalgia for a way of life now closed to them, as well as a bitterness at the injustice of the situation in which the now find themselves. Do those with what I have called the “classical disabilities” feel the same way? I honestly do not know. Probably it differs from person to person.

At what point does a person recognize him or herself as disabled, if ever? Does being born with one of the classical disabilities affect one’s attitude toward being deaf, say? As opposed to someone who became deaf as an adult. There are, as already suggested, many possible responses. What may be of more interest & importance is how an individual accepts or rejects the framing that takes place when the word disabled is applied. The extent to which a given person accepts or rejects the frame can have a profound effect on the ways an illness develops & on the ability of an afflicted person to have a life outside the role of patient, which is, of course a framing word as well.

Because my cancer is located in my hip & pelvis, the weakened bones cannot take my full weight. At home, when I am not sitting up in my hospital bed, I get around using a walker & more recently a pair of crutches; but when I go to the cancer center I switch to a wheelchair. Staff prefer it that way because it removes the possibility of my falling, but it also speeds up the process & makes their lives a little bit easier–I walk slowly with walker or crutches. By accommodating the staff’s desire that I use a wheelchair, what, if anything, do I relinquish? In this case, I have decided that I don’t give up enough to resist the wheelchair & in fact I am often grateful for it–it’s a long way from the waiting area to the Imaging Department & since my surgery I tire easily, which can bring on vertigo marked enough to knock me over. The last thing I need right now is a concussion or broken bone.

Nevertheless, if I am willing to accept the role of patient & to be framed as disabled, I retain the right to object to such framing when it threatens my autonomy. Whatever the situation, one always has the right to say No. I get this originally from Camus’ The Rebel & from Frederick Douglas’ Narrative; more recently, from a Zen teacher. No matter how abject, even the slave (or the disabled or chronically ill) can say No. As part of my treatment I get my chest & abdomen scanned fairly often & the usual procedure with a CT scan is to have a chemical injected that makes for higher contrast. The contrast medium has to go into a vein, which means that an IV line has to be inserted before the procedure can be carried out. Usually, even though I have small veins (I’m told) this goes without a hitch, but recently the imaging technician could not find a vein. After her fourth attempt, I told her I’d had enough & that she’d have to scan me without injecting the chemical. A call to my oncologist cleared the way & the scan went forward. So, for me, it turns out, the limit is four pokes with the needle.

That is perhaps a trivial example, but when one consents to be a patient (My physical therapists call me a client, a word that carries very different implications from the word patient.) it is of paramount importance to remain also, fully, a person. Interestingly, in addition to calling the shots on the insertion of an IV or, say, a catheter, or questioning the drugs one is prescribed, maintaining one’s sense of humor is important. When I am at the hospital, I try never to be morose. I am no Pollyanna, nor am I falsely optimistic;  but I can make jocular small talk with the nurses & even the doctors (many of whom seem irony-impaired) & when I do this, we share power. I’m not entirely clear how this works, but it does. I think it involves my ability, in any situation, to say Yes. Being jocular is not expected of a patient, whereas it is expected of a person. In a person, it is normal; in a patient, extraordinary, somehow out of bounds.

I don’t suppose I have answered the question I began with–when or under what circumstance one is to be considered disabled–or any of the other questions I’ve asked along the way. Mostly, I have been thinking “out loud,” i.e., in public, about the situation in which I find myself & the various ways that naming different aspects of this situation loop back & affect the situation itself, for surely if we learned anything from 20th century philosophy & theory it is that such a feedback loop characterizes all of our utterances & shapes our discourse at the most basic level. Ezra Pound said that technique is the best test of a person’s sincerity & by technique, he meant not just artfulness, but the kind of artfulness that evidences itself as clarity. In sickness, one can easily drop one’s concern for technique, but to do so is a mistake. When we relinquish that concern, we become fully disabled, fully a patient–to the exclusion of all the other things we are. Then we are truly abject.



Show 6 footnotes

  1. This goes for single-issue politics as well.
  2. In many ways, Deaf Poets Society reminds me of the long-running print journal, The Sun.
  3. There is an analogy here to the claiming of ethnicity. Though I could probably claim to be American Indian, I was not raised in that culture & would feel like a complete phony if I were to claim I am Cherokee, despite the fact that I qualify on genetic grounds.
  4. There are people who seek to have a limb amputated. The condition, Apotemnophilia, is considered by medical professionals to be a pathology. But surely it does not feel like a pathology to those who seek voluntary amputation or blindness.
  5. There are people who hear voices–who “suffer,” that is, from auditory hallucinations but who refuse to accept labels such as “schizophrenic” or “psychotic”–who see themselves, indeed, as falling along a spectrum of possible human conditions. Some, indeed, might consider themselves as specially gifted, with powers others ought to envy. (None of this should suggest that there are not many people who really do suffer under the assault of audio or visual hallucinations & who would be glad to be quit of them).
  6. “Defect” is now problematized in ways unimagined a generation ago.

Pouring Rain

Typical late-Autumn weather for our part of the country. Cold & sodden. When I first got sick & was posting to the blog I found myself in a highly discursive mood; these days I have very little interest in explanation & for the time being at least these posts will be more like chart entries, though without any of the imposed regularity implied by the traditional notion of  a chart.  Loose, intuitive, even impulsive charts of perception & interpretation, then. Sending out signals. Do you remember spinning the dial on your grandfather’s old room-sized short-wave radio? Foreign languages? Static. Radio beacons. Morse code. A world, a room, filled with mysterious voices mediated through curtains of rain.

Thom Jones, Vietnam War Writer, Dies

Via the NY Times I see that Thom Jones has died at age 71, one of the most harrowing writers of the Vietnam War generation of Americans affected by the Vietnam War. (Jones shared both my alma maters, the Universities of Washington & Iowa for the Writers Workshop). A classic example of a specific American type. “The Pugilist at Rest” may be the single best story about the War’s influence on an individual soldier’s consciousness that I am familiar with.

Pain & the Absence of Pain, Or: “There is a Crack in Everything . . .”

After cracking (an apparently not vital for locomotion) part of my pelvis late last week & living though a weekend of increasing pain, I’ve been astonished at how quickly the pain has resolved & my psychological orientation turned around. My bones have been weakened near the site of the tumor around my lower spine because of radiation & chemotherapy, so putting a little extra strain on it by bending to pick something up apparently caused a crack. It began like a bad muscle ache on Friday & got worse until Tuesday when I got in to see my oncologist. (Could have gone to the Emergency Room but wouldn’t have been numbed & told to see my oncologist. Figured I’d just wait.) And I have to say that once I arrived my team swung into action with X-Rays, an IV for morphine, steroids . . . so that by the time I left I was already beginning to feel better. And at this point, about a week after the incident, I feel better that I had before I injured myself. The added attention to the pelvic pain has spilled over & is alleviating some of the more general pain associated with the cancer. It’s not as if I’m dancing–I still walk with a walker–but I feel almost well.

Which is a little unsettling. When I feel this well, it can be hard to recognize that I am still sick with kidney cancer. Most of this is no doubt a bounce-back effect from last week’s misery. When severe pain is reduced the body goes into a kind of celebration & pulls the mind along with it. I’m not complaining. I’ll take it. One result has been a spurt of writing–several short poems (not usually my best mode) with which I am quite happy. I’ve secretly sent a couple to friends for whom I thought they would have special resonance, but amn otherwise holding them close to my chest until I’m more sure of the language I’ve written in, which is much more Harmonium than Spring & All. More lush than I have been accustomed to working in.

The Quality of Time

It has been a little over a month since I’ve posted anything in this space. The hiatus began as carelessness, I suppose, or distraction by my own troubles, but then continued more or less intentionally. I’ve been taking a kind of vacation from human contact, listening to audiobook potboilers, surfing YouTube & napping as often as I could manage to fall asleep. I think what happened–this in retrospect–I had gotten tired of my own situation & wanted to get away from it. Time’s quality changes inexplicably.

I now find that, without consciously attempting it, that I am again interested in communication & my life as a writer. One grows tired of vacations after a while. I’m not yet sure what will come of this, but I expect to begin posting here again, at least occasionally. Not sure what I’ll write about, probably reading. I’ve just finished rereading Louis Menand’s The Metaphysical Club & have begun Isabelle Stengers’ Thinking with Whitehead. The plan to discuss the former with my friend has fallen through, mostly because of the vacation I have been describing, partly because of his pressure of work. I hope we will still have a chance to discuss books / ideas online.

A Teaching Career (Part III)

Those years in San Diego were a miracle, despite anxieties about money & the lack of a “real,” i.e., tenure track, teaching job–something I had not fully recognized until writing about it over the last couple of days. (The miraculousness of it, I mean, though perhaps I am romanticizing it in retrospect.) I published a lot & won awards & lived three blocks from the beach. I wish I could have kept it up. But we moved to cold country & my productivity certainly slowed down, hard to say exactly why (or not so hard, really, but I’m coming to that); it turns out I was confused for quite a long time about the differences between writing & a writing career–a fairly major philosophical & personal wrong turn from which I may only now be fully recovering.

The Clarkson job was not, I suppose, what I had been hoping for in some ideal sense of the perfect job, but it turned out to have a number of hidden advantages. I had seen myself working in a fairly traditional English Department rather than in a mixed Liberal Arts department serving the needs of the Engineering & Business schools, eventually, perhaps, teaching in an MFA program. That was not to be. And while Clarkson had, especially in the early days, a fairly heavy commitment to its own peculiar version of “Freshman English,” the overall teaching load was (& has remained) only two preps & three classes each semester. Many of the jobs I had been applying for, especially at state schools, had 4/4 loads with three preps. Again, I had found myself in a situation with lots of time to write. I took advantage of this, but not to the extent I might–or should–have.

Instead, I got involved with local (Clarkson) & poetry world (AWP) politics. Neither of these realms of activity were bad in themselves, but in retrospect I think they were bad for me. I was elected to the Board of the Associated Writing Programs (a fine organization of which I am still a member, though I haven’t, with one exception, gone to a conference in a long time). A little later I was elected to the Faculty Senate & not long after that became its Chair. I spent my 40th birthday at Yaddo. What could be better? The problem was that I began to see these sorts of things as a more or less essential part of being a writer & this was a mistake. It also involved increasing amounts of alcohol.

I had been a heavy drinker as an undergraduate & through grad school, but had given it up when I returned to Seattle & remained dry through the Bellingham & San Diego years. When I came to Clarkson, thinking myself now some kind of success story, I began using alcohol again. It was a time of fairly high anxiety (Would I get tenure? Would I win that grant?) & alcohol, as a psychiatrist later told me, is a very good anti-anxiety drug. Too bad about the bad side effects.

This is not a confessional essay & I’m not going to dwell on booze. In fact, I’ll glide over the whole thing by saying it did become a health problem for me, though it never interfered with my teaching, so a little more than ten years ago, I entered my second period of sobriety & did so without any particularly difficulties. It is possible that my current health difficulties are related to my past use of alcohol, but there is no way to establish causation in a single case.

But I taught well & continued to make poems & get them into magazines. I published a book titled Static with Owl Creek Press & am fortunate that it was so badly distributed it is now impossible to find a copy, for it was physically unattractive & the poems were not as strong as those in my first book. Though I edited a book (Dog Music) with a friend and wrote the text for a book of photographs (A Dog’s Book of Truths) it wasn’t until 2000 that I published another book of poetry, a good one, I think, called Magical Thinking. That was sixteen years ago! I’ve only just finished the follow-up to Magical Thinking, currently titled River with Birds & Trees, which I have just begun sending out to publishers, along with individual poems to journals & magazines. The title is intended to imitate the title of a painting, or a study for a painting: I think the poems lean heavily toward the visual for their effects, though I hope they sing & think as well.

I have another manuscript nearly complete, even more visual, that borrows its title for Richard Diebenkorn’s Ocean Park paintings–it consists of fourteen-line syllabic stanzas in numbered sequences or “suites,” so the musical element is there at least metaphorically. I’ve always thought my own verse quite “musical” or at least concerned with sound, especially rhythm & especially at the level of the sentence, though I have never felt any attraction to contemporary formalism. I suppose my poems possess “the ghost of meter,” as someone has said of a certain kind of free verse & I am often befuddled by the flatness of much contemporary poetry.

I can’t blame teaching for my slow rate of production as a poet over the last couple of decades. Partly, I think, because of my mistake, I began to doubt the value of poetry–or that’s what I thought. What I really came to doubt, finally, was the value of all the trappings of being a writer, As I said, I had become confused about this important distinction, but I am confused no more. Perhaps it is this ongoing encounter with mortality, or perhaps just finally growing old enough to let all that drop away–all that ambition–so that I have been writing lucidly in recent months & at a pace I haven’t matched since San Diego. Of course I hope to publish this current work, but I finally cannot know what will become of it–whether any of it will “last,” as they say. Some degree of success, if not fame, was once important to me, but no longer. I’d be lying if I said I didn’t care if the poems find readers–I hope they will. But beyond the usual sort of attempts at publishing, I have no control over this, so I’ve let it go.