The following is an excerpt from Roman Letters from Oslo Editions (2011)
When we spoke last, it was — and how could it not be? — of rioting and necessity, of taking and being taken by times you don’t choose. Lust for what has nothing to do with sex, or perhaps only diagonally, and carrying yourself, getting carried, what could be a battering fury and its restraints, willed and imposed.
A couple of months earlier, we wrote back and forth about swagger, the political kind, an aesthetic but much more, those rare instances of walking tall and grinding and not cowering or self-pleasuring in its feelings of being betrayed. Those women in China, the Black Panthers, the strident snappy dressers of autonomia, Toussaint, the particular withheld grin of the Kyrgyzstani man in fisherman sweater and fanny pack, strolling down the strewn road with a RPG and riot shield taken from the cops.
In Rome, where I’m trying to learn to talk differently, the word that bounces around my head the most is la rabbia — rage. Or better, in a falsely literalized equivalent, the rage, something you could come down with or become ruled by. The plague, the clap, the war, the day.
To become rabid, enraged — arrabbiata — like a dog, locked-jaw and foam, hating water and men and life.
Pasolini made a stunning film called La Rabbia — it’s up there with Marechera’s looting poem in being one of those singularly venomous examples of how “political art” doesn’t have to make you loathe both politics and art. It was paired, in release, with a trashy little right-wing film to represent “two sides” of the spectrum, and even on its own terms, it loses its way politically, falls into the worst traps of Pasolini’s thought. But rabidly, its seeking, incantational bile swallows the whole spectrum. When it lasts, and it doesn’t last long enough, there is nothing that is not profoundly conservative, weak-tongued, and pettily fascist alongside it.
I’ve been thinking that swagger and rage are necessarily bound together. This is a first try to say something about that. In brief: Swagger is the manifested expression of a deferral, a deferral of rage’s coming undone, coming apart, coming out. Of rage becoming raging. It is the held-out appearance of holding back what rage cannot be, cannot do while still being rage. Not just baring its teeth, but becoming the snarling consumption of whatever exists at a time.
And we swagger because we do not know how to part with our rage, which we cherish and press cutting close, but we learn to swagger — or rather, we’re swaggered, briefly, while the wind blows and things burn and our hands are full — because we know it darkly all the same.
Scattered thoughts on each. Swagger, in the way we meant it, shouldn’t be gendered as particularly male, not some cocksure masculinity. That would closer to the petty hysteria of machismo, the solitary equivalent of that recurrent moment that you said makes you detest watching soccer in a bar, the hanging pause before the yells. I don’t know what to call that, other than the gasp, and the after-the-fact nervous shoring up, of the urge simultaneously to belong and to be exception, to be one among many and to be the only man in the room.
Swagger has a form that is a swagger of objects, often mistaken for the swagger of who carries, wears, drives, uses those objects. (The meaning of its crass, truncated version swag, or swag bag, i.e. shitty cheap objects given or won, contains this.) For example, you can get decked out in new gear, in whatever appropriate social costume this means for you (meaning, you can carry, or pretend to be carried by, like you’re spirit incarnate, the swagger of a hustler or of an anarchist, and there’s no difference, it’s just constellating things so as to be the pure surface form of what you declare to be, the pretense of an inhuman assemblage of style and intent, of total social instrumentality, so that there can be no mistaking, if you know the codes, if you’re in the game). So when MJG boasts, “I don’t really give a fuck ‘bout swagger, I wear the same outfit three days,” he’s talking about that form, the kind of swagger that can be taken on or off.
Because the whole song, and beyond it the whole point of that kind of rap boast, is to claim you swagger whether or not you own swagger at that moment, i.e. came up from nothing but now have swagger to spare because you had that realest of real God-given swagger from the start. (As he says elsewhere, “Your swagger is not my fashion,” meaning, first, that he’s not that interested in high-fashion and Gucci this Fendi that, and, second, that fashion and swagger can never be the same thing.)
The rage of objects, however, is the same rage as that of bodies and that of us.
And if we mean swagger, we don’t mean the essentialist fantasy of “you got it, or you don’t,” with its pathetic justification of getting rich because you deserved it, not because the random swerve of events pulled you golden up over the masses of the swaggerless.
Because what you have or don’t have, or what has you or doesn’t (or better: what has us and you feel as a hot stone in your intestines) is rage, and swagger is the just momentary sense — and the walk with it, and the angle of the head, and how a group surges briefly into view — of containing rage, being able to let it go or not. It’s a flirtation with both the possibility of being dangerous and deciding to not be, as if it’s always waiting, coiled-spring tense, rustling in the wings.
Swagger is the drunken, slippery tightrope walk at the edge of self-control, on the bent wire circling around a dense lodestone that is rage.
What of la rabbia, of rage?
It isn’t anger, which knows its source, and it isn’t fury, which is always a process of unfolding. The Furies were those who tore furiously.
One is in a rage beyond cause and enraged without target.
Rage isn’t pathological, and it isn’t hydraulic. It’s not something for Freud or for Galen or even for Burton, it isn’t an outpouring or a flooding at the gates, echoing across the buoyed vessels of a crowd or drowning the skull of the one betrayed.
That’s just excitement or anger or raw hurt or, at its best, the contamination of an inchoate grouping of people that, germinally, begins a “we.”
Rage is a gathering that collects nothing.
That swollen redness around an unhealing cut, not the infection or the pus, but that throbbing heat that threatens to spread, and it carries you on.
The humours can’t describe it, because it’s more than the choleric and because rage is closer to black bile — it is melancholy stopped up, the repetition of not mourning itself stuck. But it is not a liquid or a solid.
It is molasses thick and lightlessly hot, a curling worm of stone. It sticks in the throat and the veins. Not luminous and shedding, no luxuriance or life-giving expenditure, no navigation and beacon, it is pointless all the same. Stupid in its going-on, a dead star that didn’t take the hint, it burns in a tar night without shining and nothing is illuminated.
Rage is dumber than a split lip.
There are things that make us enraged, above all ways of death: when police kill unarmed teenagers, when states murder behind the veil of law, when bands of racists go cruising for brown targets. When they don’t even bother laying hands directly, when rates of profit change and work leaves or never came in the first place, when rent goes up and food costs more and wages don’t change accordingly, and all that happens is the walls get taller and the guards get permission to open fire.
But rage forgets all this. It is the crucial idiotic center of the urge toward politics — that is, the practice of sharing space with other humans, the compression of bodies and urges into a polis — that has nothing to do with parties or laws. Rage is illegitimate, forgetful.
You can see it here, occasionally, on the walls, in the rarer graffiti, not the threadbare more of some name or some icon or what one wants or doesn’t want. But where the paint is closer to an acid and it has only stripped the sheen from the wall so that the words that come forward are the rage of building itself. A dusky stuck-throat singing, no expressive howl or yawp, no triumphal this but the seething that which is the bare scent of things.
Above all, rage doesn’t think, but it is the thought of necessity. This is felt, not thought, in that buzzing in our ears, that blockage in the temples: for blockage is the real tactic and expression of what rage is. There’s a stencil I’ve seen twice in Rome, which doesn’t read the classic Prendiamoci la città — we take the city — but Blocca la città – block the city, because the city here means the eternality of motion that makes it unlivable, a non-home, even as it builds and clears and builds once more. So rage wants not the purgative fantasy of destroying things or of taking, but simply of arresting, of throwing itself into the thresher, the road, the circuits, to make of its density a project, an interruption, and the end of projects. Rage is the prospect of the momentary, sticky freezing of the messiness of a situation, but not to make things black and white or provide some base friend-enemy optic, even as we think that if rage were unbound (which is to say, not rage at all, for it cannot unbind), if it were let loose it would give us that and we want it because it would be nice to have known externally what we think we know damn well. But rage doesn’t reveal the correct line or the better deviation. It stops up our veins, and the veins of the city, and the heart is black for one buzzing instant that yawns out, and there is nothing to wait for, no clarification to come, now nor never.
The city’s breath is held clutched by something that is not it.
None of this goes anywhere. But there’s something about this city that makes it impossible for me not to think of rage. And more, to think about swagger in its briefer joys, when feeling tough is shot through with the vulnerable openness to what isn’t you, feeling foreign and torn through with what you don’t choose.
The knowing, barely, of our rage is an opening to other winds.
Swagger opens to that, in its impossible speculative gesture of acting like rage could be expressed and used. If swagger is a walking tall, it’s a wounded, blown-open walking, not stoically or stone faced, but porous and without shine, pocked, the imagined scars over rage’s non-closure. Admitting we fuck up endlessly and don’t know better, knowing that many things should not happen and should not exist and having no idea what should exist, or how, in their place.
Back to the immediate: This constant walking has me sun-baked, and the breeze isn’t killing the heat. On my calves, there are tiny amber crystals of pus from where bugs bit me. My face feels alien to me, and I’m terribly sober at this table, and all this means that tonight I’m without swagger of any proud kind. And perhaps our whole counter-world, too, where a couple red flags mark not just a neighborhood, but the fact that it’s an exception, that these flags mean that over the city and country different colors fly, that our wanting has to wall itself away, perhaps at most dictating what kind of vocabulary we use for what sort of crowd is spilling out onto the street.
But still. But still we’re that unhealing, that tide or torn edge. And though it is felt dark and unwelcome in the solitude of one body at a time, carried without destination or purpose, unsharable, still it belongs to no one, and that’s the point in common.
Nancy Mairs and Cripple Swagger
As I have thought about Mairs death from enforced bed rest due to skin woes, I wondered why I am drawn to the work of so few people associated with disability studies. I have wondered about this for many years. Disability studies scholars are my kind of people. I should be enamored with the field. This is not the case. I find the field insular. I am a rarity in disability studies and bioethics in that I have a Columbia University PhD and long track record of publishing essays in host of peer reviewed journals. So what is my problem with disability studies? Too few scholars want to change the cultural landscape. People with a disability remain marginalized in great numbers. We are also unemployed in most cases. We are not remotely equal to typical others. No doubt the law is on our side but typical others consistently frame disability as a medical problem.
When it comes to disability, history demonstrates effective change takes place via direct confrontation. Far too few in the field of disability studies are willing to be confrontational. Far too few push back against rampant ableism in their work and life. I read many fine theoretical texts in the field of disability studies. They are a challenge and intellectually stimulating. They will earn young scholars a tenure track job but I often find myself wondering how will they empower your average person with a disability? Not at all. With Trump as president elect, every vulnerable population is at risk. I am worried about myself and health insurance. I am worried about a small wound that has forced me to bed rest. I cannot afford the wound dressings that will enable me to heal as fast as humanly possible. This will make my enforced bed rest last weeks longer than it should. I look at my wound every day and wonder why are so few scholars in the field of disability studies engaged with the real world struggles of your average cripple.
How does one change the cultural landscape? For Mairs, it was writing in a way that defied stereotypes. She was, as all humans are, a flawed person. She was diagnosed with MS at 29. Mairs struggled with depression. Maris wrote about what it felt like to feel suicidal. She wrote about being a "bad" wife and bad mother. She wrote about her husband's cancer and his infidelity. She was not an archetype. She was not a super cripple. She was as flawed as the person standing next to her. She wrote "there are rewards for making the world physically and emotionally accessible to all people, including benefits that accrue to society as whole. The more perspectives that can be brought to bear on human experience, even from the slant of a wheelchair or a hospital bed, or through the ears of a blind person or the fingers of someone who is deaf, the richer that experience becomes".
Like Mairs, I struggle with my body. My body is wildly dysfunctional and different. When she wrote "I am appalled by my appearance" I instantly felt a kinship. Unlike Mairs who "devoted an absurd amount of time and expense to its decoration" I have no such desire. While part of me is indeed appalled by my body, another part is proud of what my body can do. And here I know I am privileged. I can all my own body care. I am not physically dependent upon others and my life trajectory in every way is radically different from someone who needs help with the the ordinary.
Last night as I was reading Mairs memoir, Waist High in the World, I was reminded that we may celebrate those whose are physically perfect and wealthy (super models and professional athletes for instance) and what those perfect bodies can do those of us who are obviously imperfect and crippled can lead authentic and valuable lives. This is the heart of the problem with disability studies. There is a disturbing lack passion and engagement. Scholars care deeply about heir work. This I do not question but do they care about your average cripple? Do they care about a crippled person who has not been out of their house in years? Do they care that getting a properly fitting wheelchair can take years? Do they care I cannot access to basic health care is exceedingly difficult? Do they care that the mass transit system is difficult to access and para transit is inherently flawed? Do they care about the unemployment rate of 66%? Some do. Many do not. The privilege associated with the field is deeply troublesome. I go out of my way to be an advocate as well scholar because I have had a privileged upbringing and education. My advocacy has without question hurt my academic career. I know I am instantly dismissed from applying to some jobs because I advocate against assisted suicide legislation. The point here is that when the field of disability studies was created advocacy and scholarship went hand in hand. Today they are two very different worlds. Scholarship and advocacy can live in harmony. Some scholars have achieved this. Mairs did it. I am doing it. My deceased disability forebearers did it--people like Ed Roberts, Robert Murphy, Harriett Mcbride Johnson, Helen Keller, Mark O'Brien and many others whose legacy is largely unknown.
Only one thing surprised me as I read Waist High in the World. I forgot how nuanced her writing was on end of life, euthanasia, and assisted suicide legislation. Her words struck home as I am currently dealing with a wound that has made life come to an abrupt halt. What I have lost is a measure of control. I do not go anywhere. Others shop for me. I am without question dependent upon others. I will remain dependent upon others for many more weeks. I am isolated to a degree. Enter Mairs:
I want to be the one in charge of my life, including its end, and I want to to be able to enlist someone to terminate it if I choose "rational" suicide. I have a friend, a doctor whom I admire deeply, who has told me about assisting a patient, irreversibly ill and on a ventilator, to die. Listening carefully to the man's clear and repeated requests, calling together his family for their last goodbyes, administering a shot of morhphine to ease his passage, turning off the ventilator, remaining with him until he had gone. I would hope to find someone as brave and compassionate if I were to make a similar appeal.
Superficially it would appear Mairs is in favor of assisted suicide. This is not the case. To a degree the words above are a romantic ideal about the end of life. Written in 1986, much has changed. My students have no idea who Jack Kevorkian was. Today, a person's physician who has followed their care for many years is replaced by a hospitalist when admitted to a hospital. Continuity of care is absent in the name of efficiency. The point Mairs was making was about control. Mairs wanted a degree of control about her care and eventual death. She rejected any and all crusaders for euthanasia and assisted suicide. She identifies Dr. Death a.k.a. Jack Kevorkian as a crusader. She astutely rejected any advocate for assisted suicide because they are not looking after an individual approaching end of life but rather have an agenda. She also knew how physicians frame end of life as a failure.
Doctors despise disease, or else they wouldn't become doctors, and I have heard of those who couldn't bring themselves to tell a patient she or he had multiple sclerosis because the diagnosis seemed too horrible to bear. Isn't a doctor suffering from this kind of anxiety all too likely to tell me "You have MS? Of course you want to die! Here, let me write you a prescription so you can peacefully end it all".
Mairs knows, as do those who oppose assisted suicide, that all the safe guards in the world are inadequate. Mairs knows as do I that regulation cannot eliminate "subtle pressure to end a life perceived by others to be insufferable. If, ideally I ought never to to have been born, and if my dependent existence creates a burden on those who must care for me, then don't I have not merely the right but the obligation to die? How can I honorably choose otherwise?
What Mairs has eloquently done is to acknowledge what slick efforts to pass assisted suicide legislation seek to dismiss.
My concern is that these issues be confronted in such way as to create a social climate in which people with disabilities perceive life to be an honorable choice. And that means sending the social message that disabled people are valued and valuable, precious even, by investing in, financially and emotionally, in institutions and practices that help them out.
We are not interested in helping people with a disability lead a rich and full life. Social supports come with strings attached. Worse, if you need social supports you are an economic burden on society. I know this to be true because total strangers on Syracuse city buses tell me so. Depend upon Social Security Disability leads to a life on the edge of economic oblivion. We have a president elect that openly mocked a reporter with a disability. Paul Ryan wants to repeal or revise the Affordable Health Care Act. What reigns supreme today is hate and ignorance. That is why people such as myself were shocked by the election. We people with a disability and other vulnerable populations are hated. Strangers hate me. Emboldened by a bullying president elect and republican controlled house and senate ableism is rampant. Hate crimes are increasingly common. I need not go on. Those who are vulnerable get the message.
Aside from my life coming to a halt, reading Mairs made me realize a harsh reality. It is likely I will get a wound that will not heal. That wound will require expensive care that will not be covered by health insurance. I have been down this road. In 2010 I had the support of my family and without their support I would have died. I no longer have any familial support. In 2010 I knew I was burning a bridge. I was completely and utterly dependent upon family for financial and physical support. I know I am on my own now. I can survive a few weeks but if I get a wound that fails to heal I will die. I will die because we as a society have chosen not to do what Mairs thinks should be done--provide adequate social and institutional supports to empower people with a disability the time to heal and eventually thrive. Grim thoughts as 2016 comes to an end.