Are disability lives not worth living? The long history of "abled" voices has said, and continues to say "no"--a "no" that has been complicated by pre-natal testing and divisive political rhetoric about the nature of what a qualified life really is. In 2005 the Terri Schiavo case demonstrated to disability rights activists that when it comes to protecting disability life, conservatives had more empathy and courage than neo-liberal Democrats (with the notable exception of the Rev. Jesse Jackson).
The very idea that a disabled life is not a life at all depends both on the medical appropriation of curative utility (life with illness only possesses value in relation to its amelioration) and simple metaphor (disability understood as a ruined identity, see Erving Goffman). The dichotomies of spoiled identity have a long history on both sides of the Atlantic--eugenics, forced sterilizations, the "ugly laws", institutionalization, and the Nazi "T4" mass murder of adults and children with disabilities. The pattern is one of distillation: disability, (post industrial revolution) is broadly conceived--has been conceived as economically unviable, hence lacking all capacity for the pursuit of happiness in the world of econo-biography.
The darker version of this is the resentment of social welfare (Hitler famously depicted people with disabilities as "useless eaters"). The utilitarian (Benthamite) position (Peter Singer) holds that the greater good of society must trump the needs of a minority in pain--"good" is understood as the potential for achieving pleasure. The Benthamite pleasure principle subborns life to economic life and forgoes the question of what constitutes individual autonomy when imagined outside of industrial labor. In turn it's the right of the majority class, the "duty" of the majority class to debate the probable happiness potential and index of the minority. Many disability rights activists and scholars have pointed out the inevitable connection of Jeremy Bentham's ideas (and Singer's fealty to same) as the foundational principles of Nazism. There is truth to this because eugenics was driven by the principles of Bentham.)
The 21st century extension of disability as a cathexis of the utilitarian body and the medical model of physicality (that abnormality only has value in relation to its likelihood of cure) is now intensified by pre-natal testing. Mr. Singer would counsel parents to abort a fetus if it's future birth would result in a child without arms and legs. In his view that child would have no likelihood of happiness and (more sinister of course) such a child would impede the greater happiness of society. Singer is no scholar of economies of scale or of their pre-history. The idea that a legless man might be a great singer or poet demands an appreciation of proto-industrial village life: the majority history of human kind. But enough of Singer.
A friend wrote me recently. She's a young writer and a new mother of a little girl with a disability. She wrote because she's experienced the insensitivity of her academic colleagues and friends who have opined that they couldn't imagine raising a child with an intellectual or developmental disability. My friend has been shocked by the thuggish candor of these remarks. And by turn of the imaginative poverty of the conceptualization of a challenged life as no life at all. This is the marriage of utilitarian philosophy (absorbed through capitalism's ubiquitous social rhetoric) and the medical model of disability which holds that physical difference without the prospect of cure is not worth enduring. We are living in creepy and reactionary times. And though I've been a life long liberal, I applauded the efforts of former Florida governor Jeb Bush to save the unimaginable life of Terri Schiavo. I've never felt any ambiguity about that. Perhaps my lifetime of nearly incomprehensible difficulty to live and stand among the able bodied has given me a strange capacity for steepened joy. Not an easy joy. Not a hot rod, drive your car fast joy, It's the joy of living beautifully in the solitudes of challenge--something your average doctor or utilitarian philosopher can't imagine because they don't understand the vitality of pain.
--“Life is a hospital where every patient is obsessed by the desire of changing beds.”
--Charles Baudelaire, Paris Spleen
What can we learn from poetry about the body and the culture of bodies? Is what we see in a poem merely a figurative illustration of extrinsic historical or political truths or can a poem create a new and unforeseen nexus of identity and consciousness? As scholars concerned with the social construction of disability identity we know instinctively that the answer to the question is determined by our own rhetorical stance toward figuration. A poet is Aristotelian if she’s aiming to look beyond history for the subject of her poem. A poet is essentially Platonic if she is working in the service of verisimilitude. These categories aside we know that Ezra Pound was echoing Aristotle when he said that the poet is “the antennae of the race”. The Aristotelian imagination probes in the unknown space ahead and reports back to the great segmented worm of culture.The poet Richard Wilbur writes: “The mind is like some bat/ Beating about in caverns all alone/ Trying by a kind of senseless wit/ Not to conclude against a wall of stone.” Poetry is instinctive, far-seeing in its peculiar interiority, re-constructing the world that surrounds it. This vision of poetry holds that figurative language is exploratory, (neo)constructionist, progressive, lyrically alive.
Again Baudelaire: “It always seems to me that I should be happy anywhere but where I am, and this question of moving is one that I am eternally discussing with my soul.” One can say that lyric poetry in general is concerned with moving as an operation that defies analysis. The soul is always the totem of irresolvable and competing desires. In poetry the soul is a synonym for the reliquary; it is a place. We position the furniture of our suffering in the soul’s room. But the lyric insists there is life outside the hospital--life beyond the ward. Notice that lyric poetry concerns itself with containment. One can add adjectives that work well with suppression: abject containment, unaware containment, irrational containment—disability studies scholars will recognize this impressionistic terrain as inherently akin to the historic figurative language of disability—the lyric concerns itself with the conditions of individual abjection and is always therefore a fit medium for exploring disability awareness. The modernist Italian poet Salvatore Quasimodo wrote the following lyric in the 1930’s as Italy was descending into Fascism:
And Suddenly It’s Evening
Each of us is alone
At the center of the earth,
Pierced by a ray of sunlight,
And suddenly it’s evening.
I don’t know of any more beautiful cris de couer from the Age of Existentialism. My feeling is that lyric discord, rendered almost always in figurative darkness represents the creation of what the Swiss psychoanalyst Carl Jung referred to as “individuation” a state where the conscious and unconscious modes of thought are brought into harmony. The condition of the mind in such poems is fearful, repressed, circumscribed, and lost. The lyric mindscape is blindness whether the poet behind the poem is literally blind or not. The lyric occasion does not represent blindness. It merely works from the epistemological and psychic locus of blindness. I do not mean figurative blindness but the very real step-by-step navigation of the unknown. The urgencies of perception are necessarily reckoned with care.
Claiming disability (Simi Linton’s term) is to claim the lyric. In turn the lyric is the mode of poetry that best resists the falsifications of narrative imprinting. If people with disabilities have been exiled by history, by the architectures of cities and the policies of the state, then the lyric and ironic form of awareness is central to locating a more vital language. The exile that belongs to oneself,/the interior exile…(Richard Howard) We claim disability by lyric impulse. And by lyric impulse we rearrange the terms of awareness. The lyric mode is concerned with momentum rather than certainty. This is the gnomon of lyric consciousness: darkness can be navigated. The claiming of disability is the successful transition from static language into the language of momentum. But of particular importance in this instance is the brevity of the lyric impulse. The urgency of short forms reflects the self-awareness of blocked paths and closed systems of language. The lyric reinvents the psychic occasion of that human urgency much as a formal design in prosody will force a poet to achieve new effects in verse. Igor Stravinsky put it this way: “The more constraints one imposes, the more one frees one's self. And the arbitrariness of the constraint serves only to obtain precision of execution. We are in a hurry. We must tell the truth about the catastrophe that is human consciousness. And like Emily Dickinson who feared the loss of her eyesight we will tell the truth but “tell it slant”—the lyric writer may not have a sufficiency of time.
Poetry about the body looks beyond the constraints of physicality. The lyric is in this manner a metaphysical pursuit. William Blake’s sick rose is the mandala of consciousness:
O rose, thou art sick!
The invisible worm,
That flies in the night,
In the howling storm,
Has found out thy bed
Of crimson joy,
And his dark secret love
Does thy life destroy.
The body is not our own. In lyric time the body is faced with the urgencies of the Elizabethan memento mori. This self-awareness we describe in terms of the body is equivalent to what disability advocates refer to as the condition of being “temporarily abled” but it’s useful to understand this condition as a crucial circumstance of imaginative and spiritual consciousness.
One thinks of T.S. Eliot’s narrator in “Gerontian”: “I an old man,/A dull head among windy spaces.” How should consciousness proceed in the company of the failing body? This has always been the lyric occasion. In her booklength poem an Atlas of the Difficult World Adrienne Rich writes:
I know you are reading this poem in a waiting-room
of eyes met and unmeeting, of identity with strangers.
I know you are reading this poem by fluorescent light
in the boredom and fatigue of the young who are counted out,
count themselves out, at too early an age. I know
you are reading this poem through your failing sight, the thick
lens enlarging these letters beyond all meaning yet you read on
because even the alphabet is precious.
I know you are reading this poem as you pace beside the stove
warming milk, a crying child on your shoulder, a book in your
because life is short and you too are thirsty.
I know you are reading this poem which is not in your language
guessing at some words while others keep you reading
and I want to know which words they are.
I know you are reading this poem listening for something, torn
between bitterness and hope
turning back once again to the task you cannot refuse.
I know you are reading this poem because there is nothing else
left to read
there where you have landed, stripped as you are.
Lyric consciousness is “stripped” consciousness. The word is menacing because the world is invariably opposed to youth, sexual freedom, multi-racial identities, disabilities, the poor…
In Adrienne Rich’s poem momentum and the deciphering of language are equivalent. The lyric occasion demands a larger future because it is the epistemological equivalent of the alphabet—
a new alphabet, one acquired in transition or in pain. Emily Dickinson thinks of this epistemological circumstance as an equation:
I reason, earth is short,
And anguish absolute,
And many hurt;
But what of that?
I reason, we could die:
The best vitality
Cannot excel decay;
But what of that?
I reason that in heaven
Somehow, it will be even,
Some new equation given;
But what of that?
The lyric intelligence is Emersonian, ”transcendental” and concerned with instinctual knowing. Lyric poetry is not inherently opposed to materialism or the body—but neither is it concerned with the body as the figurative representative of spiritual or divine perfection. The broken body is as good as the one without blemish. But what of that? In this view the body is not a vehicle of transcendence. The lyric is akin to Emerson’s “other half” of man—the mind beyond the body’s confining narrative preoccupations with the establishment of a representational self.
As it became a component of English departments the discipline of creative writing began to be understood as the teaching of craft. But the signature work of contemporary poetry has been concerned with the narrative constraints of identity politics and the languages of social enforcement. Poets as diverse as W.S. Merwin, Gregory Orr, Adrienne Rich, Olga Broumas, Primus St. John, Patricia Goedicke and hundreds of others have turned the lyric impulse toward the (re)visioning of social and intellectual freedom. It seems right that in “claiming disability” the work of poets should occupy more than passing interest to the emerging field of disability studies.
In turn the crucial question is “What can (re)visioning suggest in disability terms?”
Walt Whitman is the progenitor of the “disability memoir.” His discovery of lyric prose, first as a hospice nurse, and then as a man experiencing paralysis represents the creation of a wholly conscious rendering of altered physicality in prose. Whitman begins his reminiscence in a wholly new mode. This is not the metaphorized body of the strapping, ideologically constructed man of robust, democratic labor:
A HAPPY HOUR'S COMMAND
Down in the Woods, July 2d, 1882. -- If I do it at all I must delay no
longer. Incongruous and full of skips and jumps as is that huddle of
diary-jottings, war-memoranda of 1862-'65, Nature-notes of 1877-'81, with
Western and Canadian observations afterwards, all bundled up and tied by a big
string, the resolution and indeed mandate comes to me this day, this hour, --
(and what a day! what an hour just passing! the luxury of riant grass and
blowing breeze, with all the shows of sun and sky and perfect temperature, never
before so filling me body and soul) -- to go home, untie the bundle, reel out
diary-scraps and memoranda, just as they are, large or small, one after another,
into print-pages. (Whitman 689)
This is the lyric Whitman, the disabled poet working to shape and re-shape his memories as well as his present circumstances. He does so with fragments, jottings, things untied, things untidy, nature notes, bureaucratic memoranda… He is announcing his intention to create a “lyric collage” –and by announcing that this is for the printed page he is also announcing that this is a work of art, one created out of a new urgency.
Here is Whitman again, writing of his increasing paralysis and its effect on his ways of living:
Quit work at Washington, and moved to Camden, New Jersey -- where I have lived since, receiving many buffets and some precious caresses -- and now write these lines. Since then, (1874-'91) a long stretch of illness, or half-illness, with occasional lulls. During these latter, have revised and printed over all my books -- Bro't out "November Boughs" -- and at intervals leisurely and exploringly travel'd to the Prairie States, the Rocky Mountains, Canada, to New York, to my birthplace in Long Island, and to Boston. But physical disability and the war-paralysis above alluded to have settled upon me more and more, the last year or so. Am now (1891) domicil'd, and have been for some years, in this little old cottage and lot in Mickle Street, Camden, with a house-keeper and man nurse. Bodily I am completely disabled, but still write for publication. I keep generally buoyant spirits, write often as there comes any lull in physical sufferings, get in the sun and down to the river whenever I can, retain fair appetite, assimilation and digestion, sensibilities acute as ever, the strength and volition of my right arm good, eyesight dimming, but brain normal, and retain my heart's and soul's unmitigated faith not only in their own original literary plans, but in the essential bulk of American humanity east and west, north and south, city and country, through thick and thin, to the last. Nor must I forget, in conclusion, a special, prayerful, thankful God's blessing to my dear firm friends and personal helpers, men and women, home and foreign, old and young."
In lyric terms this prose is necessary to assure the poet’s survival. Gregory Orr’s useful polarities of lyric incitement come to mind: Whitman is experiencing “extremities of subjectivity” as well as the “outer circumstances [of] poverty, suffering, pain, illness, violence, or loss of a loved one.” As Orr points out: “This survival begins when we "translate" our crisis into language--where we give it symbolic expression as an unfolding drama of self and the forces that assail it” --see Orr's insightful book "Poetry of Survival" the most elegant analysis of crisis recast as fragmentary immanence.
- Posted using BlogPress from my iPad
It’s possible to say that disability is simply a hangover from the Victorian age. People with physical or mental differences are not second class citizens save that they are made so. Nowadays we know better. We have better technology and far better methods for assuring inclusion. What principle then, keeps steering us such hapless strugglers who must fight to be heard? I think disability proves the need for behavioral therapy for everyone. Well yes, of course. And so does bagpipe music.
This morning I am hurrying. I am not alone in this. The clock says: “The only thing now is not to disappear.” In this way the clock is opposed to instinct, opposed to the body, even opposed to nature. The folk poetry of the world (pick anyplace) tells us that disappearance is imminent. There’s a witch coming, she’s dressed up like a shack and she runs on chicken legs and she’s going to devour you because you were minding your own business. Which gets me to my point: Marxists will say that the clock was given its exceptional power in the Industrial Revolution, but those of us who are forced to hurry, like geese before the rod, know that the clock is just trying to tell us that the witch with the chicken legs is coming. Keep moving. Keep rolling. Keep blinking. Keep limping. Erving Goffman understood the stigma of disability but he left out this insight: able bodied people see, in people with disabilities, and far down in their collective unconscious--see people who won’t outrun the witch dressed like a shack and running on her chicken legs. When people who do not currently have a disability see pwds they worry about running from the Baba Yaga. Trust me on this. Meanwhile, I have to get going, just like you my friend. The lines of the day are fuzzy. Where are my gloves?
--after Pentti Saarikoski
In the morning on Theory Road
Ableists and doctrineaire landscapers accosted me
Told me I was sily wanting to go places like everyone else
A little higher up under my apple tree a fawn and her twins nosed fallen fruit
Malice, dressed as a bureaucrat told me to give up
His forehead wavy, eyes quite specific, didn't much like the blind he said
I climbed the steps to the dance floor
Late summer clouds calling me
To dance with them but I lay down on my back
& listened as if my life depended
This blog ardently supports the efforts of the National Federation of the Blind to protest sub-minimum wages for people with disabilities.
Blind Americans To Protest Subminimum Wages
(National Federation of the Blind)
July 20, 2011
BALTIMORE, MARYLAND--The National Federation of the Blind, the oldest and largest nationwide organization of blind people, announced today that its members will conduct informational protests across the United States to raise awareness about the practice of paying wages below the federal minimum wage to Americans with disabilities.
The protests will take place at the district office locations of United States Senators serving on the Senate Committee on Health, Education, Labor and Pensions (the HELP Committee). The HELP Committee is currently considering legislation -- the Workforce Investment Act -- which would reauthorize the payment of subminimum wages to disabled workers.
Dr. Marc Maurer, President of the National Federation of the Blind, said: "Unequal pay for equal work on the basis of disability is unfair, discriminatory, and immoral. The senators who serve on the HELP Committee must decide whether they stand for the outrageous exploitation of disabled workers, or for true equality for Americans with disabilities."
On Wednesday, August 3, the HELP Committee will vote on the Workforce Investment Act, which contains language reauthorizing the Rehabilitation Act of 1973, as amended. The Rehabilitation Act is supposed to provide services to disabled Americans so that they can obtain competitive employment, but Title V, Section 511 of the proposed Rehabilitation Act language references Section 14(c) of the 1938 Fair Labor Standards Act, which allows certain entities holding special wage certificates to pay workers with disabilities less than the federal minimum wage.
Entire press release:
Blind Americans to Protest Subminimum Wages
Imagine your world going dark. Contemplate the fading sight of a loved one. Grapple with the responsibility of delivering a diagnosis. Renowned theater artist and UI graduate Rinde Eckert takes you behind the eyes and into the heads and hearts of those surrounded by the shadows of blindness. Crafted from interviews collected via an unusual collaboration between Eckert and the University of Iowa Carver Family Center for Macular Degeneration, Eye Piece will feature performers from the UI Theatre Arts and Dance departments and the School of Music as well as Eckert himself. With humor and compassion Eckert will lead us on a journey through darkness toward a different kind of illumination.
Monday, January 25, 5:30 pm / 1289 Carver Biomedical Research Building,
Kelch Conference Room. Panel discussion about the creation of Eye Piece with Rinde Eckert, Dr. Ed Stone, Steve Kuusisto, and two cast members. Open to the public.
Tuesday, January 26, 12-1 pm / Braley Auditorium in UIHC’s Pomerantz Family Pavilion. Discussion about the impact of vision loss on family members with Rinde Eckert, Dr. Mark Wilkinson, and others. Open to the public.
This project is made possible in part by a grant from the Association of Performing Arts Presenters Creative Campus Innovations Grant Program, a component of the Doris Duke Charitable Foundation.
It is presented in collaboration with the UI Theatre Arts Department’s Partnership in the Arts and the UI Division of Performing Arts’ Creating the Future Initiative. It is also presented in collaboration with the University of Iowa Carver Family Center for Macular Degeneration and the University of Iowa Carver College of Medicine Writing Program.
First I should tell you that the toilet boys are subcontractors. Everyone is a subcontractor nowadays. Need a filling for your tooth? The dentist will be right back but in the meantime Dr. Squatch will be happy to take care of you. He's "board certified" in Malibu. And he knows all about pain management. Many patients prefer him to the real dentist we're told.
The toilet boys came to my house last week and replaced two commodes. Or to be more specific: the commodes and the tanks. Toilets are two part affairs, even nowadays, some 150 years after Sir Thomas Crapper first flushed his flusher for Queen Victoria. I suppose I knew this. Like you I know lots of stuff. For instance one of the early Christian saints lives inside my chimney and he occasionally blows soot into my living room to remind me of my moral obligations. But I digress.
Toilets are two part inventions and that's all you need to know. The toilet boys installed the crappers and fled.
My mistake was to tell them I was blind. If you're new to this game take some advice from me: never never tell the toilet boys you can't see. Its best to act like Al Pacino driving that Ferrari and fooling the traffic cop by pretending to look him dead in the eye. Look the toilet boys right in the eye. Tell 'em the dead crappers are upstairs. Tell 'em not to track feathers on the rug. Whatever. Just leave the blindness out of the affair.
I revealed my blindness to the toilet boys because they were doing the subcontractor fandango. Here's how it works: we're in your house and we can fix your toilets but we really don't want to fix your toilets since that necessitates actually procuring the new toilets which in turn requires us to drive to "Toilet Town" and pick up the new machines (for indeed these are machines in the proper sense) and we don't want to do this--we'd rather that "you" the customer go to "Toilet Town" while we sit here on your wonderful front porch with its inviting rocking chairs. While you're away at "Toilet Town" we will eat our breakfasts and feed the rabbit who evidently lives under your lilac bush and we'll probably tell a couple of dirty jokes.
So of course I told them that I can't drive to "Toilet Town" because I can't see, etc. etc. Oh I tell you the Toilet Boys were crestfallen. But off they went.
When they came back with many boxes I didnt' think much about it. I was busy writing some recommendation letters for former students. I have always found that you can't write a good recommendation if you're thinking about toilets. I left the installation to the professionals.
They made lots of noises. And after an hour they told me they were done. They showed me the new toilets. They invited me to flush. Everyone was happy. They took the old toilets and drove away.
Ah but never never tell them you can't see. When my wife Connie got home and checked things out we discovered that the Toilet Boys had assembled a white commode with a pink tank. Why not? The blind guy won't notice. And probably the blind guy is married to a blind woman--isn't that the way it works? She won't notice either. Who wants to make two trips in one day to "Toilet Town"? Not me. Not me either. So let's just install pinky and get the hell out of Dodge.
Of course not everything is a disability story. For the sake of broad mindedness I should assume that the toilet boys were simply incapable of reading the box or, perhaps like many sighted people they weren't using their eyes at all. (Have you ever noticed how many sighted people become completely blind in airports? It turns out that when sighted people are feeling goal oriented they lose the ability to see what's in front of them. I'll write more on this in a subsequent post.)
Or maybe the toilet boys were suffering from toilet blindness. Its like snow blindness I imagine. If you stare at too many shiny white bowls and tanks you lose the ability to see colors.
Whatever the explanation there it was: a custom assembled pink and white toilet. It looked a bit like the Cadillac that Elvis bought for his mother.
Now I'm awaiting the return of the boys. How long will I wait today? That, as they say, is anybody's guess.