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

Generally I have been skeptical of single-issue literary magazines.[1. This goes for single-issue politics as well.] 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 At a time in our literary history when most literary journals do not publish author photos, Deaf Poets insists on them; what's more, they ask each writer they publish to write a description of the photograph--along with a biographical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. In many ways, Deaf Poets Society reminds me of the long-running print journal, The Sun.] 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. 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.]  It is not a club very many people would willingly join.[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.] 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. 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).] In any case, using one filter--that of the "classical disabilities" such as blindness, deafness, or birth defects[6. "Defect" is now problematized in ways unimagined a generation ago.] 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 teacherNo 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.    

Author: jd

Joseph Duemer is Professor of Literature Emeritus at Clarkson University in northern New York state. His most recent book of poems is Magical Thinking from Ohio State University Press. Since the mid-1990s he has spent a good deal of time in Vietnam, mostly Hanoi. He lives with his wife Carole & five terriers (four Jack Russells & one Patterdale) on the stony bank of the Raquette River in South Colton.