Planet of the Blind

NPR: Unfit to Write About Disability

There's a piece by Chana Joffee-Walt on NPR's website entitled "Unfit for Work: the Startling Rise of Disability in America" which is so ill informed about its subject it reminds me of one of those Ronald Reagan stump speeches. Driven by anecdote rather than cultural analysis, her thesis is simple: the number of unemployed Americans receiving disability benefits has skyrocketed over the past twenty years. She intimates without fully declaring it, that there's a vast social "scam" taking place--in the absence of good middle class jobs, and following the "end welfare as we know it" enterprise, poor people simply decline into aches and pains, thereby getting themselves declared unfit for work.

Alas, Joffee-Walt hasn't done her homework, a matter that may be inapparent to many of NPR's readers, just as Reagan's audiences were unaware that behind the curtain the Gipper believed "facts were stupid things" and was untroubled by any and all of the misrepresentations of social programs that propelled his candidacy for president. Such arguments depend on pathos rather than facts. Joffee-Walt fails to address the biggest fact in the room, that disability is a social construction even more than a medical category, and in turn the artificial architectural and physical constraints marshaled against people with disabilities are both products of history and the industrial revolution. One wishes she had bothered to read Lennard J. Davis' essay "Constructing Normalcy: The Bell Curve, the Novel, and the Invention of the Disabled Body in the Nineteenth Century". Disability is entirely economic and has been so since the move to industrial models of labor. Those who cannot work in the factory were labeled "disabled" and that model of human economic utility largely continues to this day. Reasonable accommodations are the solution for workers whose physical capacities decline but as any seasoned person with a disability who has managed to remain in the workforce knows, obtaining accommodations is often so difficult, so humiliating, so Kafka-esque, most people give up.

70% of the blind remain unemployed in the United States, many of whom might well be able to work with the proper accommodations but employers don't want to provide accommodations fearing the expense, though in point of fact most workplace accommodations are relatively inexpensive. Think of a laborer, someone who is required to lift boxes. He suffers a ruptured disc. He can't lift boxes. Perhaps he could be retrained to work with software. Most businesses resist this kind of accommodation, preferring medical and social determinations that are no more sophisticated than those the Victorians had.

Another way to say this is that a nation that believes in work is also a nation that believes in accommodations. Joffee-Waitt misses this dynamic and ongoing dialectic and fails to illuminate the true nature of disability and joblessness. 

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Professor Stephen Kuusisto is the author of “Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir “Planet of the Blind”, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges“ has just been released. He is currently working on a book tentatively titled What a Dog Can Do. Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com

From Welfare Queens to Disability Deadbeats

  

 

Paul Krugman’s blog post entitled “From Welfare Queens to Disabled Deadbeats” relates both the realpolitik and the rhetorical irresponsibility of our age. By “realpolitik” I mean good old fashioned preservation of power. By rhetorical irresponsibility I mean the red herring that social programs are the cause of our nation’s financial woes. Krugman writes:

If you want to understand the trouble Republicans are in, one good place to start is with the obsession the right has lately developed with the rising disability rolls. The growing number of Americans receiving disability payments has, for many on the right, become a symbol of our economic and moral decay; we’re becoming a nation of malingerers.

 

Now I of course (speaking as a blind person) am a professional malingerer. In fact I wake up every day wanting mints on my pillow. I want all kinds of stuff. Public transportation, solid veterans benefits, affordable housing, easy access to disability friendly technology, free wheelchairs for those who don’t have fat incomes—I’m actually something more than a malingerer Senator Elephant, I’m a believer in the good, old fashioned social contract. 

I say this having once upon a time been a recipient of Social Security Disability and Food Stamps. I also lived for a time in Section 8 housing. Why? Because I lost my adjunct teaching job largely because I was advocating too noisily for disability rights at the rinky dink college where I found myself fighting discrimination against students with disabilities. The tone deafness of the Elephant Pols has much to do with something that has nothing to do with disability and social services—it has to do with finding a new underclass to kick. Krugman writes:

 

What strikes me, however, isn’t just the way the right is trying to turn a reasonable development into some kind of outrage; it’s the political tone-deafness.

I mean, when Reagan ranted about welfare queens driving Cadillacs, he was inventing a fake problem — but his rant resonated with angry white voters, who understood perfectly well who Reagan was targeting. But Americans on disability as moochers? That isn’t, as far as I can tell, an especially nonwhite group — and it’s a group that is surely as likely to elicit sympathy as disdain. There’s just no way it can serve the kind of political purpose the old welfare-kicking rhetoric used to perform.

The same goes, more broadly, for the whole nation of takers thing. First of all, a lot of the “taking” involves Social Security and Medicare. And even the growth in means-tested programs is largely accounted for by the Earned Income Tax Credit — which requires and rewards work — and the expansion of Medicaid/CHIP to cover more children. Again, not the greatest of political targets.

The point, I think, is that right-wing intellectuals and politicians live in a bubble in which denunciations of those bums on disability and those greedy children getting free health care are greeted with shouts of approval — but now have to deal with a country where the same remarks come across as greedy and heartless (because they are).

And I don’t think this is a problem that can be solved with a slight change in the rhetoric.

 

 I don’t know what kind of bubble the elephant classes are living in. I suspect its a small bubble which is of course a matter of some substantial irony. But there are lives in the balance. I urge people with disabilities to fight back: don’t become today’s Reaganite “Welfare Queens” in Washingtonian discourse. 

 

Technorati Tags: Welfare Queens, Paul Krugman, Disability Deadbeats

Disability Rights and Education in the Election Season

The latest report from the Department of Education on disability rights enforcement and guarantees is out and can be read in an accessible pdf at:

http://www2.ed.gov/documents/news/section-504.pdf

 

In this election season it's useful to remember the infamous moment during the primaries when Texas governor Rick Perry announced that if he became president "three departments of government would be gone of the first day". Of course everyone remembers that he couldn't remember the three he was planning to eliminate, a gaffe that ruined his campaign, but how many remember that "Education" was a department he did remember? My point (such as it is) is that MItt Romney if elected will pick up that cudgel despite his declaration during Wednesday's debate that he cares about education and about children with disabilities. Don't you believe it! 

The Morning Coffee Bioethics Blues

It’s early and this promises to be a long day. I have to fly to New York tonight where I’ll be speaking in the morning to high school guidance counselors about the honors program I direct at Syracuse University. It’s early though. I can still pack, walk my dogs, finish some business. The mind enjoys its small compensations. 

 

The mind likes coffee. The mind does not like contemporary bioethicists who subborn people with disabilities into categories of further abjection. Peter Singer and his posse. 

If you parse the thinking of the Singerites down to its minimalist acorn their thinking is that medicine is aimed at curing people, not assuring people the most dignified and diverse lives possible. Why am i thinking about this? It’s early and this promises to be a long day. I will likely be treated poorly by New York City taxi drivers, maybe airline personnel. My disability marks me as a sub-caste and there’s no getting around it. And American academics hold the same prejudices. The mind likes coffee. 

 

Last night I was explaining to my stepson how metaphorical thinking contributes to human manners of inequality. I told him that we think imagination is a terrific moral force, but in fact it’s equally primitive and awful--a thought he hadn’t quite allowed himself. My point was that symbolic thinking will kill us if we don’t master it. Just call me Ernst Cassirer. 

 

The utilitarian idea that good lives are those that are flawless, or can be made so is tied to the industrial revolution--good lives are lives that can be devoted to the factories. 

 

The mind likes coffee. 

 

Clearly I haven’t had enough this morning. 

 

Of Peter Singer:

 

 

“In an interview with The Independent newspaper in England, Singer said he would definitely kill a disabled newborn baby.

He indicated he would do so "if that was in the best interests of the baby and of the family as a whole."

http://www.lifenews.com/2006/09/12/bio-1766/

 

 

 

Poetry as artful plagiarism

“Poetry is an artful plagiarism sometimes, where odd combinations of words influence our language and heightens our experience.”    – Stephen Kuusisto

 

Professor Stephen Kuusisto is the author of “Eavesdropping: A Memoir of Blindness and Listening” and the acclaimed memoir “Planet of the Blind”, a New York Times “Notable Book of the Year”. His second collection of poems from Copper Canyon Press, “Letters to Borges“, is scheduled for release in October 2012.  As director of the Renee Crown University Honors Program and a University Professor at Syracuse University, Steve speaks widely on diversity, disability, education, and public policy. www.stephenkuusisto.com, www.planet-of-the-blind.com

Watch Out! A Blind Man Has Entered Your Shop!

I apologize for bringing my guide dog into your store. I apologize for needing your help. And I’m sorry you must point me in the right direction. I understand your day is precious. I know you were having a perfect meditation before I entered your establishment--you were navigating the circle within the circle, the dances of the gods known only to Proclus. And now, here I am, the walking manifestation of decay, a perilous figure from a lost battle. 

So much happens in the hubbub of the city, bells and parades, and then a blind man walks into your shop. You poor sonofabitch! Watch out! It might be catching! 

Yes, you should think of me as the soft breeze of calamity. 

Meanwhile, what am I up to? I want to buy a book at Barnes & Noble, but I’m told I can’t come in. I want to buy some batteries at the computer store on 6th avenue and Lo! I’m told I can’t come in. I want to take a taxi, and you guessed it, I can’t get in. 

Let’s review: books, batteries, and a business meeting. Not bad for a man who symbolizes malevolent fate! 

 

 

Thanks for sharing, Janelle Eckardt

If Janelle "knows anything, it is this: bucket lists are for procrastinators–live as though you are … living."  

Here she shares with us her  Guide to the Best Disability-Based Websites on the Net

The Barefoot Review seeking submissions

Jamie Sue, from The Barefoot Review, made contact and asked us to share the following post. Happy to do so...

What is it?

The Barefoot Review is a new publication. We welcome submissions of poetry or short prose from people who have or have had physical difficulties in their lives, from cancer to seizures, Alzheimer’s to Lupus. It is also for caretakers, families, significant others and friends to write about their experiences and relationship to the person.

What's the Purpose?

Writing can be a tremendous source of healing and allow difficult feelings and ideas to be expressed. Unfortunately, every piece submitted can't be published, however every piece is important. The process of writing, verbalizing feelings that may be subconscious or unexpressed is more important than the acknowledgment of publication. We hope sharing this work online will help people facing similar difficulties find inspiration in the words of others.

What's in a Name?

The Barefoot Review is named to evoke several meanings: baring your soul and expressing naked feelings. Bare feet ground you, give you balance, and connect you to the Earth. The review is here from a desire to help others.

Where is it?

The review is here, there and everywhere —www.barefootreview.com Please be sure to read the submissions guidelines before sending us your work. submissions@barefootreview.org Question, compliment or complaint? info@barefootreview.org

Jeremy Bentham, Peter Singer, and Contemporary Disability Advocacy

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.

“Creative Writing and Disability Studies: Liminal Epistemologies”

--“Life is a hospital where every patient is obsessed by the desire of changing beds.”
--Charles Baudelaire, Paris Spleen


1.

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.

2.

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.


3.

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.

4.

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
hand
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.


5.

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.

6.

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?”


7.

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:

Specimen Days

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.

SK



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