I am physically disabled and I come from the country where the able-bodied typically assumed that I wasn’t capable of thinking. In truth, while being home-schooled, I was already an over-achiever. I was reading Nietzsche, French existentialists, and law textbooks at the age of fourteen, as my few friends called me “the smartest person they’ve ever known.”
As I moved to the States with my dedicated mother, my single goal was to study. I got my B.A., M.A., and I’m nearing my dissertation defense.
I took the full course load and sat through the three-hour seminars in acute pain. That was before my time of painkillers.
My thinking and my thirst for knowledge were acknowledged, in act of recognition without any genuine interest, let alone curiosity about a different, both subterranean and raw, thinking. Mine wasn’t the body fit for the fast-moving, self-contained trajectories of the academy.
If I had to work so hard to prove, to myself, to the world, that I’m more than capable of thinking, I started wondering, “What else am I being denied when I’m denied, to use Hannah Arendt’s words, the life of the mind?” I found the answer both for myself, experientially, and in the writings of the disabled essayist Nancy Mairs. It was moral life, but more on that later.
First, let’s say a few words about disability itself. The two main theoretical paradigms addressing the category of disability are the medical model and the social model. What is the medical model, the term coined in 1983? As Siebers puts it, “the medical model situates disability exclusively in individual bodies and strives to cure them by particular treatment, isolating the patient as diseased or defective.”[i]
In short, it is about one’s medical facts or impairment. The social model, on the other hand, construes “disability is presented as a social and political problem that turns an impairment into an oppression either by erecting barriers or by refusing to create barrier-free environments…”[ii] Which is to say, that it focuses on the disabling effects of society, on oppression.
According to Sue Halpern,
Physical health is contingent and often short-lived. But this truth eludes us as long as we are able to walk by simply putting one foot in front of the other. As a consequence, empathy for the disabled is unavailable to most able-bodied persons. Sympathy, yes, empathy, no, for every attempt to project oneself into that condition, to feel what it is like not to be ambulatory, for instance, is mediated by an ability to walk.[iii]
The very possibility of losing one’s health, of catching a glimpse of the hidden, nocturnal ocean of corporeal fragility all bodies are swimming in, is erased by the lived, immediate experience of this health.
Since the social model argues that people are disabled by society, not their unruly bodies and lived experiences, a multi-dimensional model is attempting to take into account the social, the experiential, the political, the autobiographical, the painful, and the messy. This multi-focal model recognizes that corporeality, pain, and oppression are locked in a slow disastrous tango and attempts to halt it.
It is through this complex lens that I am presenting an essay from the memoir Waist High in the World by Nancy Mairs. While her piece “Body in Trouble” addresses several important issues, I intend to focus on her argument that the disabled can’t be good moral subjects, at least according to ‘the normals.’
Mairs begins by noting that, in biblical times, physical and mental abnormalities were equated with demonic possession. Only divine intervention could ‘fix’ the afflicted. While this way of thinking about the body in trouble seems archaic to us at first, Mairs examines an array of metaphors, thus showing that good health equates with good moral qualities. Indeed,
“Keep your chin up,” we say (signifying courage), “and your eyes open” (alertness); “stand on your own two feet” (independence) “and tall” (pride); “look straight in the eye (honesty) or “see eye to eye” (accord); “run rings around” (superiority). By contrast, physical debility connotes vice, as in “sit on your ass” (laziness), “take it lying down” (weakness), “listen with half an ear” (inattention), and get left “without a leg to stand on” (unsound argument).[iv]
The position and the movement of the body is space is thus aligned with the state of the soul.
Needless to say, sitting fairly still, reclining, or lying down are the lived every reality of many disabled people, such as myself. How do we break through the correlation of the bodily health and moral health? According to this insidious logic, I am bent, misshapen, hence I am the opposite of good.
As Mairs goes on to say,
Female bodies, even handsome and wholesome ones, have tended to give moralists fits of one sort or another (lust, disgust, but seldom trust). As everyone who has read the Malleus Maleficarum knows, “All witchcraft comes from carnal Lust which is in Women insatiable.” If a good man is hard to find, a good woman is harder, unless she’s ( r) prepubescent, (2) senile, or ( 3) dead; and even then, some will have their doubts about her. It is tricky enough, then, trying to be a good woman at all, but a crippled woman experiences a kind of double jeopardy.[v]
While the concept of marginality has been subject to close feminist scrutiny, Mairs insists on her experience of being literally marginal. She’s literally on the fringes of visibility, an unwilling embodiment of metaphors and linguistic framing.
Given this lack of visibility,
It may be this radical materiality of my circumstances, together with the sense I mentioned earlier that defect and deformity bar me from the ranks of “good” women, which have spurred me in the past, as they no doubt will go on doing, to put the body at the center of all my meditations, my ‘corpus,’ if you will. Not that I always write about the body, though I often do, but that I always write, consciously, as a body.[vi]
If Mairs is writing as a body, it is the body that has been stripped of any moral efficacy.
On a personal note, coming from Russia where the disabled are usually seen as senile or living-dead, I have years of experiencing people either talking to me as if I’m a child or simply ignoring me to address the nearest ‘adult’ instead. I am tiny and bent, which means that I have so often been denied moral agency and thinking as such.
The thrust of Mairs’ accusation is then: “Beyond cheerfulness and patience, people don’t generally expect much of a cripple’s character. And certainly they presume that care, which I have placed at the heart of moral experience, flows in one direction, ‘downward’: as from adult to child, so from well to ill, from whole to maimed.”[vii]
The disabled are routinely seen as conserving our scarce energy to spend it on ourselves alone. We’re not expected to express care. Our able-bodied friends, should we have any, rarely come to us for advice because we’re not worldly enough, we’re lacking in real-life wisdom, we’re like the reflection of an ailing unicorn in a broken mirror.
Mairs’ imperative, however, is that she should not, under any circumstances, be denied participation in moral life. Her means of reclaiming her status as a moral subject are her words, her tongue, her keyboard. She shines in her astute judgment and deeply moral concerns by injecting language with the unexpected.
Let me take a detour here in order to examine the conjunction of disability and morality. The denial of moral life to the disabled has both the kernel of truth and untruth to it. As we hear in Buffy: The Vampire Slayer, from a terminally ill person, “You try vomiting for 24 hours straight because the pain in your head is so intense and then we’ll discuss the concept of right and wrong.”
Or, in the spinoff show Angel, “Look, I’m not so good at apologies. Mostly because I think the world’s out to screw me so I’m generally more owed than owing.”
I submit that the nature of pain does indeed make the sufferer functions as a jolt, as a razor-sharp incentive to radically revise their existing moral notions, culminating in the victim’s eternal question, “Why me?” in this sense, the kernel of truth is a wounding initiation into radical fortuity, into the fact that it could’ve been someone else, into the conviction that the distribution of suffering is fundamentally groundless, stupid, and absurd.
Furthermore, I also submit that being thrown into the gap between the ‘what ought to be’ and the ‘what is’ constitutes an origin of morality.
The opening is the dilemma best articulated by the Austrian writer Jean Amery, when he states that the only way to communicate the brutal pain of the torture inflicted on him as a result of the torture he was subjected to in an act of resistance against National Socialism, is to inflict it.[viii]
The dilemma is then the following: once I realize the senseless nature of suffering, I can choose to wish for the world indifferent to my suffering to suffer with me, to understand, to know. Or I can choose to make a moral decision to protect, if not the world, then at least my loved ones, from this monstrous understanding, to the extent that I can.
It is the morality of the jolt. Just listen to the French writer and philosopher Maurice Blanchot—
I was going to write that she was like a statue, because she was motionless and turned towards the window, and she really did have the look of a statue; but stone was not part of her element; rather, her nature was composed of fear—not an insane or monstrous fear, but one expressed by these words: for her, something irremediable had happened.[ix]
Something irremediable had happened. The summer sunlight was so inviting and beautiful when I got the phone call that my mother, my primary caregiver, was in the hospital with skull fractures. It was a car accident. The sunlight looked even brighter now, even more beautiful, and I couldn’t understand. The chasm has become visible.
The chasm in question is a moment of choice precisely because the irremediable has wiped out our pre-existing moral ideas and habits. It wiped out the thinking that if you’re good to others, the world will be good to you, that bad things don’t happen to good people.[x]
To put it otherwise, it brings the dormant questions of morality into an almost unbearable sharpness. Thinking and judging collide in the question, “Why me?” Their potential is a highly singular moral code.
As Hannah Arendt noted,
There exists in our society a widespread fear of judging that has nothing whatever to do with the biblical “Judge not, that ye be not judged,” and if this fear speaks in terms of “casting the first stone,” it takes this word in vain. For behind the unwillingness to judge lurks the suspicion that no one is a free agent, and hence the doubt that anyone is responsible or could be expected to answer for what he has done. The moment moral issues are raised, even in passing, he who raises them will be confronted with this frightful lack of self-confidence and hence of pride, and also with a kind of mock-modesty that in saying, Who am I to judge? actually means We’re all alike, equally bad, and those who try, or pretend that they try, to remain halfway decent are either saints or hypocrites, and in either case should leave us alone.[xi]
The jolt, the disaster, they destroy the fear of judging. I judge the world and myself. To do otherwise, would be to give up thinking altogether.
The morality that stems from the experience of the irremediable isn’t of mores, moral customs, and facile niceness. It is essentially ambiguous due to the fact that it harbors both raw-boned severity and tenderness. I must be severe to survive, to endure, and I feel empathy for those who have been smacked down by their irremediable or the boughs of moral innocence on the verge of being devoured by the senselessness of suffering and its distribution.
I mean, there’s just chaos, and violence, and random unpredictable evil that… that comes out of nowhere, and rips you to shreds.
If our answer is, “It is me and if it happened to be me, I will not wish the same pain for you,” I become the object for my own moral standards. Granted, these standards have their historical, cultural, and affective dimensions. Yet, the moment when I rise after being crushed, the moment I look into my oppressor’s eyes and the space darkens, this moment is excruciatingly mine. This ‘grain’ grows without ever losing its singularity and opacity.
A hurt upon a hurt, the moral subject is born.
Since the question, “Why me?” is fundamentally relational, it is about the sufferer and the oppressor, the victim and other victims, the singular I and the world, I argue that this is not the morality of a self-contained human being, this is not the morality of hyper-individuality.
A poem as lovely as a tree: As the night wind blows, the boughs move to and fro. The rustling, the magic rustling that brings on the dark dream. The dream of suffering and pain. Pain for the victim, pain for the inflicter of pain. A circle of pain, a circle of suffering.
It is the morality of excessive seeing and affect, the morality where relationality itself that is brought to the fore, unbearably and harrowingly, inescapably, sharply and, at times, tenderly.
This morality is also rooted and animated by affects or emotions, the ‘too much’ of relentless pain that accompanies some medical conditions, some lives. Having relationality at its core, this morality runs against the self-sufficient, rational or emotion-free, objective, typically masculine subject of the Western philosophy, the philosophy that attempts to harness or enslave emotions, as opposed to tapping into them, to making them your allies, your power.
I want to conclude by suggesting that the morality of the irremediable isn’t a questionable privilege of the sufferer. Once again, taking relationality and the ruthless work of the jolt seriously, we can say that it affects those who encounter the sufferer similarly and differently. The catastrophe of the sufferer transforms bystanders into witnesses. It creates a problem, a disturbance, a state of restlessness and empathetic anguish. Or it ought to.
We see too much, but this is not a veiled suggestion of moral superiority. Speaking in the first-person singular, I am painfully aware that judging is also risk-taking, that I make mistakes, that I am often exhausted, cognitively dulled by opioid painkillers, weakened, occasionally bitchy and impatient, lonely, reduced to tears that even my assiduously cultivated self-control can’t stop, running a fever due to my incurable auto-immune condition.
But I can no longer shut off thinking, judging, and incessant, usually futile attempts to understand.
I have been using the language of suffering, pain, and victimhood, but not to imply that there are the disabled who are in fact ‘comfortable in their skin.’ However, it isn’t my intent to ignore the harsh facts of our lives. As Charlton states,
We must focus on the poor, since by all estimates the majority of people with disability are poor, unemployed, and undereducated. In the United States, only one-third of people with disabilities are employed, versus upward of 70 percent of “normal” workers. Indeed, many people with disabilities end up in prisons—particularly those with cognitive and affective disabilities.[xii]
This is the United States. The Russian disabled writer Ruben Gallego, whose memoir about his childhood in Soviet orphanages won the prestigious Russian Booker Prize and has been translated into several languages is even harsher,
Gallego wished he had been born in America, where (he had been told) the disabled were simply put down. (Later he visited the country and was deeply impressed with McDonald’s.) There was euthanasia of a sort practised on disabled Russian children. If after 10 years of education they hadn’t learned to make a living, hardly likely for those who couldn’t walk, they would be transferred to an old people’s home, where they would be unlikely to last more than weeks.[xiii]
What I hope to have accomplished here is yoking together the disabled and a high intensity and acuity of the moral, judging and risk-taking in the name of the moral, pointing out the dark origins of what might be called ‘the morality of the irremediable,’ the groundless and relational nature of suffering, which does indeed come in many forms and shapes.
My physical abilities are limited to typing one-handedly, using the wheelchair joystick, and turning the pages of a book. I chose not to say, “Please” every time I need something because I don’t want to sound like a beggar, because I’ve been through too much to care about this brand of humiliating niceness.
You have to look deeper, you have to sense the ‘grain’ that makes me look into the eyes of my oppressors. But I do not want anyone to have the visceral knowledge of suffering. It is my choice.
I also hope to have made visible the constellation of disability, thinking, and moral life.
This constellation remains caught in common and academic ableism,[xiv] the increasingly professionalized field of philosophy and its expectations of standing upright, morally sound bodies, and the web of socio-political relations that makes us unwilling to look beyond the facile morality I spoke of earlier, to express intellectual curiosity.
The question I will leave you with is the following: What changes does professional philosophy need to undergo to make the space of visibility for a more singular thinking and a more singular moral life?
[i] Tobin Siebers, “Disability in Theory: From Social Constructionism to the New Realism of the Body.” In Davis, Lennard J. The Disability Studies Reader.
[ii] Lennard Davis, “The End of Identity Politics…” in Davis, Lennard J. The Disability Studies Reader.
[iii] Susan Wendell, “Toward a Feminist Theory of Disability.” In Davis, Lennard J. The Disability Studies Reader.
[iv] Nancy Mairs, Waist-High in the World: A Life Among the Nondisabled (Boston: Beacon, 1996), 57.
[v] Ibid., 58.
[viii] Jean Amery, “Torture” in At the Mind’s Limits: Contemplations by a Survivor on Auschwitz and its Realities (Bloomington: Indiana University Press, 1980).
[ix] Maurice Blanchot, Death Sentence (Barrytown: Station Hill Press, 1998).
[x] See Franklin Perkins, Heaven and Earth Are Not Humane: The Problem of Evil in Classical Chinese Philosophy (Bloomington: Indiana University Press, 2014).
[xi] Hannah Arendt, Responsibility and Judgment (New York: Schocken, 2003).
[xii] Lennard Davis, “The End of Identity Politics and the Beginning of Dismodernism: On Disability as an Unstable Category.” In Davis, Lennard J. The Disability Studies Reader.
[xiii] Mars-Jones, Adam. “White on Black by Ruben Gallego: From victim to hero” The Guardian. 2006. https://www.theguardian.com/books/2006/jan/29/biography.features2. Accessed 29 Sept. 2016.
[xiv] Ableism has recently landed in the Reader’s Digest Oxford Wordfinder (Tulloch 1993), where it is defined as “discrimination in favor of the able-bodied.” I would add, extrapolating from the definitions of racism and sexism, that ableism also includes the idea that a person’s abilities or characteristics are determined by disability or that people with disabilities as a group are inferior to nondisabled people. Simi Linton, “Reassigning Meaning.” In Davis, Lennard J. The Disability Studies Reader.