Month: September 2013

As I grow older I see how stories about disabilities repeat. Recent articles and blog posts have reintroduced one of America’s old (but never quite forgotten) fascinations, the fake disabled person phenomenon. Suddenly able bodied people become convinced there’s a lot of crippled hooey going on. Outrage ensues. The New York Post publishes articles about fake service animals being smuggled into five star restaurants in Manhattan for god’s sake. And we’re off to the races. From limited and inconclusive evidence we’re told there’s an epidemic. Yep. Able bodied people are bringing Fido into Le Cirque and even onto airplanes by pretending to be (insert condition here).

 

You’d think these stories would be presented for what they are: illustrations of chicanery by able bodied people, but instead the presentations are just unbuttoned gut bustings about that damned Americans with Disabilities Act. If those disabled people didn’t have rights why the rest of us wouldn’t envy them so much! A pox on them for luring us normal folks into faux cripple crime! Cut to video of old lady with cat glasses who says: “He used to be such a nice boy, he used to cut the grass!”

 

One of the things that interests me about this turn of events is its evidentiary and performative turn–assuming there really are able bodied “cripple pretenders” they must invariably discover the experience of being stared at is rather enjoyable. That’s a significant difference from the subjectivity most disabled people experience. Forget the quotidian nature of the enterprise–dragging old moist Fido into the dressing rooms at Bloomies–able bodied people are having one hell of a thrill while pretending to have invisible disabilities.

 

The whole thing underscores my long held view that ableism isn’t driven by contempt of the disabled so much as its pushed by America’s peculiar brand of class warfare. I’ve seen it in the airport–the looks of occasioned disdain because I get to board the plane with my guide dog before the first class passengers. There’s a prevalent suspicion in America that no one gets ahead unless he’s pulling a fast one. Our class system with its impacted envy is hard to understand if you’re from Europe or Mars.

 

From The Enlightenment by Anthony Pagden, a fact which cannot be improved:

“The struggle over the identity of the Enlightenment was also a part of the Enlightenment itself. In December 1783 the Berlinische Monatsschrift, a widely read and generally progressive journal, published an article by a theologian and educational reformer named Johann Friedrich Zöllner. The article was on the desirability of purely civil marriages–a somewhat recondite topic. It might have passed unnoticed, and probably unread, if it had not been for a single footnote. “What is enlightenment?” Zöllner asked. “This question, which is almost as important as what is truth, should indeed be answered before one begins enlightening. And still I have never found it answered!”¹³It was perhaps the most significant footnote in the entire history of western thought–it was certainly the most widely discussed. Six years later, shortly before the outbreak of the French Revolution, the German poet and philosopher Christoph Martin Wieland–once described as the German Voltaire–while seated on the toilet and reaching for what he coyly calls a “maculature” (in other words, a piece of toilet paper), found, “not without a slight shudder of astonishment,” that the sheet of “good white soft paper” he held in his hand had printed on it six questions, the first of which was: “What is enlightenment?”^14″

The bug bear of essentialism has been eating my nerves. Ableist culture is the term people use in disability circles to frame self-advocacy as a struggle against–well–”the culture that only values healthy bodies”. My problem is that I don’t like being eaten.  The essentialist model of disability makes me feel like a mantis being chewed from below, my head being saved for last. 

 

The problem–my problem I suppose–is that I don’t believe ableist culture exists. I believe in ableism to be sure and like millions of people with disabilities I’ve experienced grievous and unjust opposition to my very presence in public, in school, on the streets. With my guide dog at my side I’ve been prevented from entering restaurants from Milan to Manhattan. Ableism is inveterate behavior, transmitted within families, affirmed by media representations of bodily preferment, preached by ministers–don’t misunderstand me–there’s plenty of ableist activity in the village square. In fact “plenty” is the wrong word. Prejudice against people with disabilities is pervasive both in the United States and around the globe. 

 

Ableist ideas are spread by organs of culture(s), including but not limited to ministries of propaganda (Joseph Goebbels), Time Magazine, or John Stossel. Hip-Hop promotes ableism and schoolyard lingo spreads it widely–”he’s so lame”; “what are you, blind/deaf/retarded…? Mis-representations of cripple-dom burgeon all about us.

 

Culture is not hegemonic concerning the subject of difference despite Foucault’s broad insistence that it is. Oppositional rhetorics that incorporate cultural abjection depend on reaction formations of alienation. The term is Freud’s and may seem dated but the principle stands. Reaction formation is a defensive process in which unacceptable emotions and impulses are mastered by exaggeration of the directly opposing tendency.    

I hate myself and will declare myself beautiful. Wikipedia offers the example:

 

“A man who is overly aroused by pornographic material who uses reaction formation may take on an attitude of criticism toward the topic. He may end up sacrificing many of the positive things in his life, including family relationships, by traveling around the country to anti-pornography rallies. This view may become an obsession, whereby the man eventually does nothing but travel from rally to rally speaking out against pornography.”

 

Foucault argues that what overly arouses all of western culture is fascism:  “the strategic adversary is fascism… the fascism in us all, in our heads and in our everyday behavior, the fascism that causes us to love power, to desire the very thing that dominates and exploits us.” 

Self-insertion: if you believe this I’m sorry for you. 

 

I will not psychoanalyze Foucault as I’m neither qualified to do it and I’m unwilling to say he was sick. There’s a trap in essentialist thinking which is neo-Victorian, tending to see things as black or white–accordingly it tends toward the obsessional.

 

I’ve always liked Edward Said on the subject of Foucault:

 

“Many of the people who admire and have learned from Foucault, including myself, have commented on the undifferentiated power he seemed to ascribe to modern society.  With this profoundly pessimistic view went also a singular lack of interest in the force of effective resistance to it, in choosing particular sites of intensity, choices which, we see from the evidence on all sides, always exist and are often successful in impending, if not actually stopping, the progress of tyrannical power.  Moreover Foucault seemed to have been confused between the power of institutions to subjugate individuals, and the fact that individual behavior in society is frequently a matter of following rules of conventions.  As peter Dews puts it:  ‘[Foucault] perceives clearly that institutions are not merely imposed constructs, yet has no apparatus for dealing with this fact, which entails that following a convention is not always equivalent to submitting to a power…But without this distinction every delimitation becomes an exclusion, and every exclusion becomes equated with an exercise of power.’”

  

 

**

 

I do not believe in hegemonic ableist culture. Like Said I’ve seen effective resistance. Nevertheless the formation of a stabilized (dominant) ableist culture persists throughout disability studies and is accepted widely. The materialities of diverse embodiments are serious subjects and pervasive rhetorics of exclusion need to be resisted. But one should also resist Foucault’s metaphorization of fascism.   

 

 

 Disability Advocates Oppose E-Reader Waiver Petition

A crow eats something dead in a magnolia tree’s shadow. He’s doing his crow work. If you think like Darwin you say he’s surviving. If you’re a particularly religious person you say he’s surviving but additionally imagine a creator who drove sir crow to the magnolia. If you’re especially spiritual it’s terrifying to imagine appetites, devoid of mind may have driven the crow. 

via www.planet-of-the-blind.com

I forgot to mention Donald Justice was my teacher, later, much later…

A crow eats something dead in a magnolia tree’s shadow. He’s doing his crow work. If you think like Darwin you say he’s surviving. If you’re a particularly religious person you say he’s surviving but additionally imagine a creator who drove sir crow to the magnolia. If you’re especially spiritual it’s terrifying to imagine appetites, devoid of mind may have driven the crow. 

 

Death is the ultimate figure of essentialism, the arbiter of identity, for he arrives in our gardens dressed like a terrorist or priest and voila! you gain your long sought identity as he takes your hand. “But wait,” says our man, “I’ve just now understood my identity! This is unfair!” “Shut up,” says Death. And that’s if Death likes you. If he doesn’t like you he says nothing. It takes someone else to confirm a man’s self-awareness. Essentialism. 

 

Standing in the magnolia’s shadow is difficult. Essentialism makes it harder. My personhood requires conscious opposition–I’m not me without a spiritual North Korea as Christopher HItchens used to say. I need an imperial god who “made me” and cast me into life like bread on the waters; who sits back and watches as I float among reeds like baby Moses, who looks forward to seeing me fight opponents in his name–for gods, whether monotheistic or gaggling in pantheons, love a good cock fight. 

 

Human beings are perpetual adolescents, struggling for languages and postures of self-determination and independence, largely by telling stories, and hoping they will be better stories than those they were given at birth.  

 

I remember someone gave me a book of poems when I was in a psychiatric hospital at 17. I was busy trying to kill myself but doing it “slant” as my method was self-starvation. The doctors thought something was wrong with my digestive system and put meat on a string down my throat to test my digestive enzymes. All I wanted to do was die. I wanted the old arbiter of identity to appear at my bed side. I didn’t want to be a blind teenager anymore. 

 

The book of poems was an anthology of some sort–there were lots of poems–but I keyed on this particular selection by Donald Justice:

 

“Counting the Mad”

 

This one was put in a jacket,

This one was sent home,

This one was given bread and meat

But would eat none,

And this one cried No No No No

All day long.

 

This one looked at the window

As though it were a wall,

This one saw things that were not there,

This one things that were,

And this one cried No No No No

All day long.

 

This one thought himself a bird,

This one a dog,

And this one thought himself a man,

An ordinary man,

And cried and cried No No No No

All day long.

 

 

**

 

How much can you know at 17? Well of course you can know a lot for potentiality is available at any age and if you are curious you can get somewhere. Reading Justice’s poem I saw getting somewhere might have to do with the mind itself. Teenagers are good with irony. Of course I saw myself–I looked at the window and there was nothing–though this was literally true with marginal sight; I would eat no meat; I cried at being a man-child. I was plenty smart alright. 

 

The key word in the poem is “ordinary”–the darkest word of all. Used as an adjective it means “normal” and of course this is where darkness comes from. Who wants to be normal? Day to day, usual, common? 

 

Medicine strives for just this outcome–it offers a delegation of usualists–utility driven ordinary-ist mechanics. The man has been cured and now knows he is a man. No No! It would be better to be a bird or a dog. Better to peck under magnolias. Now that he’s turned loose as a man he’s free to be average, nondescript, conventional, mundane, undistinguished, standard, run of the mill, uninteresting, bland, suburban. 

 

Can it be true? Do doctors in their white coats make you well and send you back into the world as a hackneyed, garden variety existential stick figure? 

 

As I say, how much can you know at 17?

 

At night I used to sneak out of my hospital room and wander the halls in my white gown.

 

Sometimes when I met people I talked and sometimes I didn’t.

 

I didn’t like people and I certainly didn’t like conventional people. I didn’t like the doctors. I especially didn’t like the psychiatrist who asked me if the leather lanyard I wore around my neck was a fetish. It was in fact just a lanyard to which I attached a house key. In the  hospital they’d taken away my key. Talk about figurative, run of the mill, undistinguished thinking. Fetish indeed! I saw he was a nondescript mummified nebbish. I refused to talk to him. I wasn’t Holden Caulfield. I was smarter than that. I was starving my way right off the stage. 

I suppose poetry saved me but I can’t prove it. Maybe it was the autonomic nervous system which drove me to eat entire half gallons of ice cream spooning frozen clots straight from the package into my mouth. Maybe it was impatience. It was taking too long to die in Strong Memorial Hospital in Rochester, New York. And all those men in white coats were ghastly. Perhaps I’d pretend to be well and kill myself later. One thing’s for sure: when you’re back in the world things, simple things, yes even the ordinary things can appear interesting again. Later I’d read Marianne Moore’s famous poem entitled “Poetry” where she says that the life of the mind is laden with contempt, especially for art, but then you discover the genuine in spite of aesthetic weariness:

 

Poetry

 

I, too, dislike it: there are things that are important beyond

      all this fiddle.

   Reading it, however, with a perfect contempt for it, one

      discovers in

   it after all, a place for the genuine.

      Hands that can grasp, eyes

      that can dilate, hair that can rise

         if it must, these things are important not because a

 

high-sounding interpretation can be put upon them but because

      they are

   useful. When they become so derivative as to become

      unintelligible,

   the same thing may be said for all of us, that we

      do not admire what

      we cannot understand: the bat

         holding on upside down or in quest of something to 

 

eat, elephants pushing, a wild horse taking a roll, a tireless

      wolf under

   a tree, the immovable critic twitching his skin like a horse

      that feels a flea, the base-

   ball fan, the statistician–

      nor is it valid

         to discriminate against “business documents and

 

school-books”; all these phenomena are important. One must make

      a distinction

   however: when dragged into prominence by half poets, the

      result is not poetry,

   nor till the poets among us can be

     “literalists of

      the imagination”–above

         insolence and triviality and can present

 

for inspection, “imaginary gardens with real toads in them,”

      shall we have

   it. In the meantime, if you demand on the one hand,

   the raw material of poetry in

      all its rawness and

      that which is on the other hand

         genuine, you are interested in poetry.

 

 

 

**

 

When you are not longer trapped by essentialist ideas you begin to see how the ordinary and the imagined, the cooked and the raw, the healthy and abnormal are all genuine. There is poetry without half poets. Essentialism argues–insists–that your singularity exists only as it stands in opposition to colonizers, imperialists, hetero-normative-istas,  able-ists, patriarchs, racists–jesus small j its a long list. I say essentialism is half poetry for like Moore I can’t discriminate against business documents and school books, not if I believe in rising above insolence and triviality. 

 

**

 

I know this is getting thick. I started under a magnolia tree. But picture me walking the dark halls of a hospital, my white gown drifting about me. I never tied the thing properly.     

What is a hospital but a place of insolence and triviality? What can you know at 17? I saw early that I didn’t want to spend my life in opposition to doctors, nor did I want to declare my worth by means of compensatory strategies–becoming the best mountain climber with thick glasses or a poetry all star. I believe in the UN charter on human rights but not in academic and neo-Aristotelian taxonomies as products or vehicles of resistance. I saw early I was tired of products. Essentialism demands nearly endless productions. It insists you have value insofar as you are not normal, not objectified, not disabled in a medical or social way–instead you are outre, wicked, glowingly abnormal. What a prison! Really. I feel I’m right back in spiritual North Korea. I can’t present you with an imaginary garden with real toads”–Moore’s idea of poetry equivalent to god–nor can I say with any certainty that art will help you live. Worse, I can’t tell you how to live or what to do. I remember Kurt Vonnegut telling the graduating class at Hobart and William Smith Colleges (my alma mater) way back in 1974 that no responsible adult can answer questions about how to live and what to do. But my real toads say that culture is more complicated and interesting than essentialism proposes. Disability Studies which I care a good deal about, argues disability is a social construction–that physical difference is valued or devalued, given utility or denied it, in accord with architectures and ideas. This is entirely true. But in North America we’ve come to believe that cultural forces magnify or direct this social construction process–that culture is intolerant of difference, antithetical to it, hostile to cripples, queers, people of color, all who “present” as abnormal.  Maybe this idea will help you live. But I think culture is more variegated, flexible, inclusive, and magical than simply a mechanism or muscle. I know too many “normal” people who would find the cultural devaluation principle of disability studies to be incomprehensible to believe in the idea without irony. If I’d believed Donald Justice’s poem I’d have imagined that being a man who did not think himself a dog was a dreadful fate. How silly. And foolish too to believe your only value lies in your blindness. 

Culture as Victor Turner knew has many ceremonies. 

 

My crow under his magnolia has no interest in me. Maybe you will achieve the same wisdom. But don’t call me by my disability name. Its not a real toad.

By Andrea Scarpino

 

 

Because she’s 64 years old. 

 

Because she tried four times previously and failed. 

 

Because she was gracious in defeat, expressed her sadness, cried in front of the press, always thanked her team. 

 

Because it’s 110 miles from Cuba to the Florida Keys. 

 

Because she was in the ocean 53 hours, through daylight and darkness. Because her only rests came while treading water, being passed food she ate on her back, liquids she sipped through a straw. 

 

Because she swam without a shark cage. Because, at times, she wore a mask and suit to protect her from the jellyfish stings that ended previous attempts. Because the mask made her breathing difficult, the suit slowed her progress. 

 

Because you’d have to be a little bit crazy to attempt such a feat. 

 

Because the human body is not meant to be submerged in salt water that long. 

 

Because, near the end, she vomited constantly, her lips were swollen, her shoulders ached, her face and back badly sunburned. 

 

Because she was helped by a team, kayakers using electrical currents to ward off sharks, divers who swam ahead to remove box jellyfish, physicians and oceanographers and boat pilots and friends. 

 

Because when she reached the Florida Keys, fans swarmed the beach screaming her name, blowing air horns, clapping, cheering, waded into the water to greet her. 

 

“I thought it wasn’t humanly possible or she would have done it,” her dear friend Bonnie Stoll told The New York Times. “I was glad to be wrong.” 

 

Because we should all have friends like that. 

 

Because even though our culture dismisses women, female athletes, lesbians, older people, she continued to believe, deep in her bones, she could succeed. 

 

Because she shared that belief with each of us who wanted to share it. Because she used her passion to ignite our own.

 

It was Basho I think who said a pine 

is another thing that doesn’t love us–

he was right surely–cold hearts

of trees are black as life or dying,

 

there’s no help for it. Friend I’m happy

to know; cleaned of impulse; freed 

from rolling dice or plucked petals 

of angels love me or love me not. 

 

Even late spring light off the lake

is immune to Bach, the hill 

where young Jan played 

just as rain was coming on, 

 

a violin for barometer; and later, 

on his honeymoon he brought

laboring men to haul his baby grand

deep into Kaelian woods–

 

all true, and I think he played naked

upright, smoking a cigar, Liszt 

for Aino, that sugary bride,

candles arranged like tiny gods 

 

but still a ruse. He knew 

like all aging, unbelieving men

trees do not hear, they are daughters

of ice, no wickedness or heart

 

or shore or whisper.  

  

When a guide dog joins your life many things happen at once. First you’re no longer alone with your vision loss. Most people are at first quite alone with it–owing to the medical model of disability once you’ve lost your sight you’re defective. They take away your driver’s license. Maybe they give you a telephone number for “Talking Books” though probably not. So you go home. You’re the smallest alone person in the world, a final final man, woman, or child of alone. You’re at the center of the earth. You can’t even take a walk because no one has bothered to show you how. Blindness then expands like those early wings Leonardo drew. It becomes a bat-like thing shadowing your relations with the world. If you’re a child the public school doesn’t want you; if you go to university they make it amazingly tough to get what you need. In the classroom the videos and projections are not described. Sullen bus drivers refuse to say which stop you’re at. The days are steep and that’s “once you’re out”. Its no wonder so many stay off the work rolls and give up. Its a frigging unkind world out there. 

 

Maybe the word is rancorous. Its a rancorous world. The means of production doesn’t like vision loss. Its an expenditure. You represent in your sightlessness the neo-Victorian figure of uselessness. Progressives think its a good idea to educate you or give you rehabilitation. But others imagine you should go begging. There are blind people who beg in the shadow of the university where I teach. Ironically they’re just a block away from the disability studies program.  You see how easy it is to fall off the wheel of fortune. 

 

And then the dog enters. She’s capable and comes from a team of accomplished people. Her people believe there’s nothing the blind can’t do. Your dog is eager. So the first thing you discover with your dog is capability and zeal and though the two things are not always the same they are with dogs and you’re the grand prize winner because you’re going to go everywhere with c and z and your dog won’t let you forget it. “What’s your dog’s name?” a stranger asks. “Prozac,” I tell her. 

 

Then thing number two occurs: the ten thousand cracks in culture start widening. Because you’re on the street or in a restaurant, suddenly you’re on every street, you enter every cafe. You’re no longer liminal. No threshold stops you. But there’s more to this than entry or access–its the complete engagement of possibility. Don’t kid yourself. Possibility is the stock of the soup. 

 

I know guide dog users who have climbed mountains, walked the Appalachian Trail, run marathons, and in turn, yes, work in the unkind world out there. But dogs are the antidote. Ain’t no unkindness around here. Or as Jerry Lee Lewis might say: “there’s a whole lotta shakin‘ goin‘ on.”

  

The elegiac calling after–when you’ve lived to see how progress has stalled during your lifetime–the making of art, of poems from this. It’s right to see where we’ve failed, the act leaves a roadmap for younger people who may follow. It’s right also to know we were advocates who did our share, who stood for things, stuck out our necks. We were. We got ourselves arrested. We spoke truth as we understood it. We attempted to shelter people. We demanded justice for children. We rescued animals. We did these things and now we are old. We feel it, the coming of age. Friends say, “this isn’t the America of my childhood” and they mean it. I’ve always admired this poem written in the darkness of the early fifties by Kenneth Rexroth. He addresses it to Eli Jacobson with whom he marched in the heyday of the American labor movement in the twenties:

 

 

“For Eli Jacobson”

There are few of us now, soon
There will be none. We were comrades
Together, we believed we
Would see with our own eyes the new
World where man was no longer
Wolf to man, but men and women
Were all brothers and lovers
Together. We will not see it.
We will not see it, none of us.
It is farther off than we thought.
In our young days we believed
That as we grew old and fell
Out of rank, new recruits, young
And with the wisdom of youth,
Would take our places and they
Surely would grow old in the
Golden Age. They have not come.
They will not come. There are not
Many of us left. Once we
Marched in closed ranks, today each
Of us fights off the enemy,
A lonely isolated guerrilla.
All this has happened before,
Many times. It does not matter.
We were comrades together.
Life was good for us. It is
Good to be brave — nothing is
Better. Food tastes better. Wine
Is more brilliant. Girls are more
Beautiful. The sky is bluer
For the brave — for the brave and
Happy comrades and for the
Lonely brave retreating warriors.
You had a good life. Even all
Its sorrows and defeats and
Disillusionments were good,
Met with courage and a gay heart.
You are gone and we are that
Much more alone. We are one fewer,
Soon we shall be none. We know now
We have failed for a long time.
And we do not care. We few will
Remember as long as we can,
Our children may remember,
Some day the world will remember.
Then they will say, “They lived in
The days of the good comrades.
It must have been wonderful
To have been alive then, though it
Is very beautiful now.”
We will be remembered, all
Of us, always, by all men,
In the good days now so far away.
If the good days never come,
We will not know. We will not care.
Our lives were the best. We were the
Happiest men alive in our day.

 

And here is Rexroth’s breathtaking poem written on the thirtieth anniversary of the execution of Sacco and Vanzetti:

“Fish Peddler and Cobbler”

 

 

Always for thirty years now

I am in the mountains in

August. For thirty Augusts

Your ghosts have stood up over

The mountains. That was nineteen

Twenty-seven. Now it is

Nineteen fifty-seven. Once

More after thirty years I

Am back in the mountains of

Youth, back in the Gros Ventres,

The broad park-like valleys and

The tremendous cubical

Peaks of the Rockies. I learned

To shave hereabouts, working

As cookee and night wrangler.

Nineteen twenty-two, the years

Of revolutionary

Hope that came to an end as

The iron fist began to close.

No one electrocuted me.

Nothing happened. Time passed.

Something invisible was gone.

We thought then that we were the men

Of the years of the great change,

That we were the forerunners

Of the normal life of mankind.

We thought that soon all things would

Be changed, not just economic

And social relationships, but

Painting, poetry, music, dance,

Architecture, even the food

We ate and the clothes we wore

Would be ennobled. It will take

Longer than we expected.

These mountains are unchanged since

I was a boy wandering

Over the West, picking up

Odd jobs. If anything they are

Wilder. A moose cow blunders

Into camp. Beavers slap their tails

On the sedgy pond as we fish

From on top of their lodge in the

Twilight. The horses feed on bright grass

In meadows full of purple gentian,

And stumble through silver dew

In the full moonlight.

The fish taste of meadow water.

In the morning on far grass ridges

Above the red rim rock wild sheep

Bound like rubber balls over the

Horizon as the noise of camp

Begins. I catch and saddle

Mary’s little golden horse,

And pack the first Decker saddles

I’ve seen in thirty years. Even

The horse bells have a different sound

From the ones in California.

Canada jays fight over

The last scraps of our pancakes.

On the long sandy pass we ride

Through fields of lavender primrose

While lightning explodes around us.

For lunch Mary catches a two pound

Grayling in the whispering river.

No fourteen thousand foot peaks

Are named Sacco and Vanzetti.

Not yet. The clothes I wear

Are as unchanged as the Decker

Saddles on the pack horses.

America grows rich on the threat of death.

Nobody bothers anarchists anymore.

Coming back we lay over

In Ogden for ten hours.

The courthouse square was full

Of miners and lumberjacks and

Harvest hands and gandy dancers

With broken hands and broken

Faces sleeping off cheap wine drunks

In the scorching heat, while tired

Savage eyed whores paraded the street.