Thoughts While Shaving: Or, My Muse

What does it take to drop old habits of thinking about disability? I want to see a day when people with disabilities are not conceived of as a separate category of the citizenry, as say, "disabled museum patrons" or "disabled scholars". If the field of disability studies has any intrinsic value it must lie in precisely this area of engagement. PWDs are not exceptional learners or spectators. They are the public.

If you’re really reading me you’ll notice that I don’t see distinctions between able bodiedness and the compensatory notion that there exists a specialized learning process for PWDs.

The blind don’t learn something special by having a tactile experience of a painting. The sighted do not learn anything special by walking around blindfolded.

Each of the examples above can only be illuminating if the exercise is conceived of as a performance not about what we know, but rather about what remains unknown.

Just because a person can see a painting doesn’t in turn mean they know how to talk about what they see. And just because a blind person can walk around New York and "know" the place by alternative means, doesn’t automatically suggest that their impressions of this experience are going to be worthy of poetry.

The arts are invaluable insofar as we’re challenged to think about the poetry of each exquisite minute. In the end, the muse doesn’t care what your body looks like.

S.K.

Art Beyond Sight

This morning I had the privilege to deliver the keynote address that opened a two day conference at the Metropolitan Museum in New York City. The conference is called "Art Beyond Sight" and I want to post my comments on the blog so that people with hearing impairments or anyone else for that matter can see again what I said about art and blindness.

I had to leave the museum after my talk because my guide dog Vidal was having an upset stomach. If you were at the conference and would like to write to me, please feel free to do so. I had to leave the lecture hall for the sake of the museum’s carpet.

S.K.

 

Continue reading “Art Beyond Sight”

Disability Blog Carnival #23

Have you "met" Jennifer Justice yet?  She is an artist, writer and independent publisher, the creator of two popular ezines, Pedestrian Hostile and This Is Living, and has served as a contributor and editor to numerous publications (including Blog [with]tv).  She also happens to be the hostess of this month’s Disability Blog Carnival.  Penny L. Richards over at Disability Studies, Temple U. had this to say when introducing this month’s carnival:

"Superheroes, folksongs, naked lawyers, beach wheelchairs, and a
Therevada oasis–it must be another edition of the Disability Blog
Carnival, with your host Jennifer Justice at Pedestrian Hostile.  A fine mix of hilarity, personal accounts, serious news and commentary, there are links for all tastes.  Go check it out!"

Need we say more?

Cross-posted on Blog [with]tv

Never, Never Talk to the Customer

There are physicians working in America right now who don’t talk to their patients.

While many in what we loosely called "the medical community" are aware of the aforementioned matter, there’s a corresponding assumption that the problem will resolve itself.

I recently decided to chat with some professionals from other fields just to see how they handle this kind of "disconnect" in their respective areas of inquiry. The names below have been changed because, well, that is how they do things in the witness protection program.

Jasper Schunt is an internationally recognized architect. He is thin, appears to be in his early sixties, and he looks a good deal like the comedian Don Knotts. You would never guess that he’s the man behind the blueprints for the world’s first "Fast Food" indoor playground. In fact, the more you look at him, the more you suspect he has never had anything to do with kids.

"You’re right!" Jasper says while wiping his hands with what looks like an oil soaked baby blanket. "I really don’t know a darned thing about kids. In fact when I get near children I tend to get hives."

I ask Jasper how he designed commercial playgrounds for children if he never talked to any kids.

"Rats," he says. "You put them in a tube and they’ll always go to the other end. And of course the more rats you put in, the more they’ll keep moving. Kids are no different."

When I ask him if he’s ever read Robert Coles’s book "The Political Lives of Children" he says that he doesn’t have time for "touchy feely" stuff. "Look, I gotta keep the nation’s insufficiently medicated offspring moving through these plastic tubes."

Before I leave him, I ask Jasper about his latest project.

"It’s a spin off of the Chuck-E-Cheese playground concept: I call it "Senior World"–I guess you could say it’s a kind of "roach motel" for the old folks–you know–"they check in but they don’t check out"?"

Vilnius Trap is a licensed plumber. The man has a Ph.D. from Cornell University in linguistics but after years of grinding poverty he decided to turn his back on the adapted neurological semiotics of the great "vowel shift" for good, old fashioned Victorian threaded drains.

"Yeah, I know," he says, "lots of people say I look a whole lot like Jeff Goldblum in that movie ‘"The Fly’–I have these really big eyes and forget that I’m staring at people. Plumbing work is good for me because I tend to be under sinks or behind walls."

"How do you talk to your customers?" I ask.

"I don’t actually talk to them," he says. "I mean, you know, they’re just going to tell you how the ceiling is leaking above the living room and they’re going to tell you a long, boring story about the piano from Latvia and blah blah blah."

"I haven’t got time for the domestic palaver, not if I’m going to rip out walls and floors and take a week to do what’s really a one day job."

"I’m never rude about it. I just tell them they have only one option because the situation is so serious."

"The really good thing is that people are generally terrified of their plumbing. You know, they feel grateful just to have it at all, and most people are secretly worried that if they don’t call a licensed plumber, well, something unimaginable will happen deep below the earth."

When I ask him if he’s ever asked his customers about anything having to do with their houses or apartments he waves his hand dismissively.

"No," he says, "why spoil things for them? I mean let’s be real: every plumbing job is only about 3 things: 1. the customer is friggin’ terrified that his water main is going to break at any moment; 2. they trust that the plumber has almost occult powers; and 3. they expect to pay vast sums of money to an essentially anti-social expert who is wearing ill fitting pants."

It is reassuring to know that uncommunicative professionals are still in demand.

S.K.
 

The Defective People Industry

In the world of disability advocacy there’s a term called "the defective people industry" which designates modes of thinking or organizational conduct that relies on the status quo. The "DPI" is vigorous in its self preservation and it tends to make a lot of dough.

Suppose you wanted to cure something innocuous like loud gum chewing.  (I’ve chosen this one because I have this problem.  Give me a stick of gum and within a minute I’m grinding, snapping, and gnawing like a weasel caught in a trap.)

The first thing you do is gather up a group of experts.  You will want some social scientists, some anti-social scientists, at least ten thousand social workers, an equal number of social security administrators, and you will want dentists and folks from the false teeth industry.  Of course you’ll also want the chewing gum manufacturers and a vast array of representatives from the therapy industries.  You might also want to involve at least one aroma expert.

After you’ve gathered all these authorities you raise a bunch of money.  Sometimes you already have the money before you gather your experts but most often it works the other way.

Then you print some fancy brochures.

You will also need to have catered lunches, new carpeting in your headquarters, and lots of meetings.

You will want to have many studies about annoying gum chewing.

Its really important to foster public debate about the mystery of the phenomenon. For example:

The "loud gum chewing is caused by creepy Freudian anxiety" camp. vs. the "traumatic gum chomping caused by hard to isolate neurological defect in the lizard brain (otherwise known as the limbic node).

While all of this is going on you will want to create a mechanism whereby you give out small amounts of research funding to a vast array of researchers.  These grants should be enough for the researchers to buy coffee filters and post-its.

By analogy the method is akin to giving ten thousand people enough money to study the feasibility of manufacturing one isolated part of an automobile.  No one is given the money to actually make a real car part, much less an operational vehicle.

The DPI can work like this for years.

No sector of society is without its varieties of the defective people industry.

There’s government of course but also don’t forget non-profit agencies, universities, and industry .

In "real life" there are lives in the balance because the DPI is a very entrenched system.

There are people today in the United States who are trapped in hospitals because even though their respective medical conditions will allow them to live in the community, local and state governmental agencies have a vested interest in keeping hospital beds filled.  This travesty continues despite the fact that community based living is less expensive for many of the people who are currently being warehoused.

This situation is no joke.

"Who gets warehoused?" you ask?

People who have been paralyzed in the manner of Christopher Reeve but whose insurance has run out.  One fine day your hired attendant is no longer available.  Then the local state government says, "well, don’t confuse us with the facts, we have a hard to find and dark little room for you far away from your community.  We will put you there even though it would be cheaper to let you live your life among people."

As a friend of mine would say, "In the United States you have the right to live in a closet if you are paralyzed and your insurance runs out."

S.K.

 

Jazz from Berlin

One of the chief assumptions of literary writers is that the art of prose requires acute vision.  Perhaps this idea owes a good deal to the oft repeated anecdote about young Ernest Hemingway who got off a train during the first world war in order to write his impressions about a dead dog on a rail platform.  In any event, by the 1920’s literary prose was assumed to be a slightly dressier form of journalism.  The symbiosis of the modern news photo with fictive verisimilitude became the new mosaic standard by the end of WW I.

**

"How can you write such clear imagery when you can’t see?"  I have been asked this question more often than one might suspect and yes, nine times out of ten the question comes from a writer.

The prevalence of the question suggests how deeply contemporary literary writing has become invested in the ohptho-centric view of the writer as photo-journalist.

**

My journal is a tabula rasa of the other senses.  I travel a good deal and I record my "post-visual" observations without concern for the expected fidelities of the 20th century journalist.  I don’t linger on the fact that I can’t see.  I use the notebook as a place of speculation and the freedom this gives me is essential to my practice as a writer.

Here is a notebook entry:

Kurfurstendam (Berlin)

It was raining and I borrowed a hat from the hotel’s doorman.

It was my birthday. I was all by myself.

I was born a twin and my identical brother died just hours after our birth.

I found that I was walking in Berlin and weeping in the rain.

I don’t know: I must have been twenty five years old.

in those days I could see shapes as well as colors so I followed blue jackets essentially at random.

I recited silently a list of jazz standards:

Something To Remember You By

It Never Entered My Mind

Ballad of the Sad Young Men

Why Was I Born?

Ramona

Hi Lili, Hi Lo

The Way We Were

Hush-A-Bye

Every Time We Say Goodbye

Peace Piece

Cry Me A River

Some Other Time

I’m Through With Love

Smoke Gets In Your Eyes (As sung by Rosemary Clooney)

One For My Baby

Thanks For the Memories

I Got It Bad

I walked for hours in the rain, blind and lonely in Berlin, with all those songs in my mind…

S.K.

Alone Again, Naturally

It’s my turn.  Now I am alone in the woods on an island in Lake Winnipesaukee, NH with only my two dogs for companionship.  And as hard as this may be, I have to confess: I gave Steve a hard time, but the truth is it is a privilege to be here, and for a lot of reasons.  Most of them are obvious.

I’ve been here since Sunday evening.  The days are beautiful Indian summer days, however the evenings are quite cool – low 40’s – and today I must go prowl for wood for the wood stove.   I’m almost out.  I may have to pilfer from the neighbors.  Since they’re not here, they’ll not be needing it – this week anyway.

This morning I woke up to the sounds of an animal on the roof.  It’s a new  metal roof, and so I could hear everything.   It sounded bigger than a squirrel and it caused my poor 13 year old Labrador to worry.  I climbed out of bed and curled up on the floor next to my trembling dog.  He’s very sensitive and unfortunately, the older he gets the more he worries.  He’s fine now though.  He’s curled up in a ball in the sunshine out on the deck.

Steve and I bought this cabin 6 years ago in the hopes that perhaps someday, we’ll get to spend time here – together.  Now that we have an empty nest it may be easier to arrange – someday.  So for now, Steve and I stagger our visits.  He spends most of the summer here.  I get here when I can.

It just dawned on me this morning what I like most about coming here and being alone.  It’s a real vacation – from myself.  While here I simply don’t worry about:

  • Chores?  Only the ones I assign myself, when I feel like it.  Last night’s dishes are still in the sink.
  • Shave my legs?  Not if I’m not wearing shorts this time of year.
  • Shower?  Only ’cause I can’t stand the "bed head" look for more than two days.
  • Make-up?  The wild turkeys may, but the dogs aren’t running in the opposite direction.  Why bother?
  • Deodorant?  There are some things I can’t do with out.  The dogs may run with the turkeys.
  • Happy Hour?  Hmmm.  It’s only 9:49 a.m. but hey, what’s that saying?  It’s 5:00 somewhere!
  • Cooking?  Peanut M&M’s have protein.  So does the cheese I have with the crackers I have with wine.  I’m good.
  • Dust?  I’m living amongst the spiders.  The dust slows them in their tracks.
  • Husband?  He says he’s missing me but if I need a vacation  – from myself – I can’t help think that he could use one from me too.

Still, having said all that, as nice a break from myself as this is, I’d trade it all in if I could have my husband here with me.  I don’t need a vacation from myself THAT badly…

~ Connie

Writing Poems for Friends

Writing Poems for Friends

Younger he wished
The catalpa
Or flowering Judas,
Or a path
Of washed stones—
These would bring true hearts
To his gate…And hymns
Wholly Russian,
Pepper and lamb,
Wormwood in vodka,
Stravinsky
On the phonograph,
Clouds coming close…

Now he’s less invitational
And more the resigned diarist.
Reads late at night in Finnish
The word for song: laulu,
The word for island: saari
And the phrase: kevat simfonia,
Which means, essentially,
A little symphony for your shoes…