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At a time in our literary history when most literary journals do not publish author photos, Deaf Poets insists on them; what’s more, they ask each writer they publish to write a description of the photograph–along with a biographical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.

Qualities of Altered Consciousness: Positive Side Effects?

I’ve recently, like most cancer patients, been concerned with the effects & side effects of medication. Side effects, the way we usually use the term, are unwanted, negative. But over the last couple of weeks, being treated for the crack in my pelvis with morphine & steroids & a bone strengthener, I have noticed periods of the day when I feel . . . good. Not high, just good mentally. Sometimes this is just the spacy sort of consciousness good for watching YouTube science videos, but sometimes, as this evening, the state of mind gave rise to a poem. Often, my poems begin with an idea, but this just began with a couple of images from today’s NY Times online Science section, one about the voicebox of a prehistoric bird, the other about a Saturn-like object somewhere 400 light years away. The rest was just a matter of constructing language as it constructed itself around a philosophical question–series of questions–I’d discussed with my friend Chris. It’s not that the insights are out of the ordinary, but, doing what a poet is supposed to do, I may have helped find some language to refract off the ideas in a useful way. I like the notion of refraction becauses it confuses the tendency toward making binary oppositions. I have no idea which drugs might be tweaking which neurons, or whether that matters.

Process Philosophy at SEP

I have been reading the Stanford Encyclopedia of Philosophy‘s article on Process Philosophy & am finding it quite useful, especially in terms of vocabulary & context. That is, the article provides a vocabulary & a context for using that vocabulary as it applies to Whitehead & those thinkers who have been touched by his work.

[ . . . ]

Problems & Adventures

Stengers writes that an adventure can only begin in response to a problem. Thus the old father’s perverse decision to set his sons a problem by disposing of his property 1/2, 1/4 & 1/6. The problem being that when you feed three sons, eleven camels & those particular fractions into your problem-solving machine you do not get a solution, but rather an “adventure.” Presumably, one is supposed, when confronted with a problem in this way, to go along with the adventure, as opposed to giving the machine a whack with a hammer. To do this requires a certain kind of humility that is shown admirably by the boys in the parable. Instead of escalating from giving the machine a whack to whacking each other, they seek ot the village elder. In seeking out the elder they recognize the fundamentally social nature of their problem. It cannot be solved alone, or even within the family; instead the sons must resort to the wisdom of their community (embodied in the figure of the elder) in order to sustain their adventure long enough to solve their problem. Of course, this is not a one-off proposition, but an ongoing prescription for leading an adventurous life. Still, the boys were lucky, too. They had a community to whose wisdom they could appeal; they had a problem to which the “necessary fiction” of the twelfth camel could be applied; & they were themselves humble enough to seek the community’s help in the first place. At no point along the way is the hearer of the parable asked to take anything on faith; instead, he/she is merely asked to look at the “cash value” of various possible solutions, such as killing & eating one of the camels. Not very many of these alternatives are addressed in the parable, but they are implied. It is further implied that none of them would have the value of the elder’s fiction–they would not have been adventures. Looked at in this way, an adventurous solution to a problem may be preferable to a non-adventurous one even if it lies, i.e., tells a lie by creating a necessary fiction such as the boys owning a twelfth camel, or the existence of God. (Spinoza’s god rather than Descartes’.) The elder is a pragmatist.

Bruno Latour’s Foreword to Thinking with Whitehead

Latour is one of our most prolific philosophers of science & and obvious choice to write a foreword to Stengers’ book. Stengers is, after all, trying to clear a space for thinking that falls outside the heavily guarded walls of science. Latour has been criticized by working scientists for attempting a similar undertaking in his many books.

Latour begins by placing Whitehead ahead of Wittgenstein among 20th century philosophers, an assertion that will certainly get a rise out of the vast army of Anglo-American intellectuals who have made Wittgenstein a touchstone, if not a cornerstone, of their thinking. Here at the beginning of this adventure, I remain unconvinced.

Latour notes that Whitehead has been relegated to a kind of back corner of the classroom because he has “indulged in metaphysics” and pursued a speculative mode of thinking, practices supposedly ruled out by the analytical philosophy that has so dominated 20th century thinking–at least among the small number of people who pay attention to such things. Latour focuses on the way in which science, in order to assure its objectivity has ruled out values as illusions, as part of something “secondary” to the primary work science has set for itself. Stengers is not trying, so far as I can see, to diminish the work scientists actually do, but to clear space for “illusions.” Stengers go to some pains in her introduction to not reignite the science wars & to not diminish the work of science, which she values as simply another kind of adventure, while at the same time insisting on the reality of things that science rules out.

Noted later: Doesn’t my talk in the first paragraphs above of inside & outside, of ahead & behind, immediately plunge us into the kind of dualism(s) Stengers is trying so very hard to avoid–dualism(s) very deeply embedded in our language & thought? Noted yet later: This strikes me as not a very profound insight on my part. Certainly, the way we have been conditioned to talk about science limits our ability to think completely about it. This is true of any subject, whether science or dentistry, say, because science has relegated unto itself the sole power to judge truth claims. That’s where the whole thing goes belly up.

Along came a spider and sat down beside her . . .

Having a Breezy Day

Sunny, warm, breezy. Sitting on the deck with the dogs & wondering if they enjoy the feeling of the breeze ruffling their fur as much as I enjoy feeling it on my neck & the back of my head. Maybe it’s a little ozone coming off the river & the maple leaves, but it can feel almost transcendent.

I’ve always like the word breeze as well as the phenomenon it denotes–quasi-otomattopoetic, I’d have thought it of fairly recent origin, but the first entry in the OED tells me it goes back to Anglo-Saxon. What’s more, the first definition, though now marks archaic, is entirely unrelated to any kind of wind: “. . . a name given to various dipterous insects, esp. of the genera Å’strus (botfly n.) and Tabanus, which annoy horses and cattle.” Not very nice, that. It’s only in the 16th century that the second definition emerges, and it is more specific that the sense in which we now use the word: “A north or north-east wind; spec. applied within the tropics to the NE. trade-wind.” A quite specific sort of wind. In fact, my “breeze” today is blowing from the north-east to the south-west.