Be Careful What You Call Yourself

I have been thinking a good deal lately about the psychological and, for lack of a better term, the spiritual cost of being a person with a disability. NO one needs or wants to hear the tiresome statistics about unemployment among PWDs or the discouraging lack of progress enforcing the Americans with Disabilities Act. These are narratives of abjection (to borrow a term from the French critic Julia Kristeva) and over time the mere act of talking about the conditions of marginalization becomes a secondary form of abjection. To paraphrase the old sixties maxim: "You are what you talk about."

No sensible person would advocate avoiding the use of civil rights language, whether we’re talking about women’s rights or Latina rights or African-American rights, or children’s rights. Yet it seems to me that I am increasingly uncomfortable as a representative of "the disabled community" or "the blind community"—not because I would eschew these political realities, but because the insistence that these are my subjects prevents me from being publicly a more reflective or complex person. I have a sensibility that’s different from what you might suppose.

I’ve been walking down the street during my guide dog training with a baseball cap on my head that says "NAVY" and veterans call out to me as I work with my guide dog. I am not a war veteran. I care however very deeply about the plight of our war veterans. I was never in the NAVY but I recognize that the Navy protects our freedoms. I am opposed to the war in Iraq but I support our troops and our sailors. I am patriotic but I don’t believe in imperialism. I am fiercely loyal to the Democratic Party but I think we need a tough foreign policy candidate in these difficult times which is why I was for Chris Dodd and am now for Hillary Clinton.

I am not a blind person when I listen to the opera or swim in the Baltic. I am not a knee-jerk Democrat. As I said some time ago in these pages, I sided with the GOP in their efforts to defend the life of Terry Schiavo.

My feeling is that we must go beyond identification based on race or disability or ethnic origin or gender or sexual orientation for only in so doing can we rebuild a progressive and thoughtful means of public engagement in our nation.

This is what civics used to teach. I want to live beyond our Balkanized era. The cultural critic Lennard Davis calls this idea "dis-modernism" by which he means that the idea of disability is essentially a cultural or social construction. If you build the right architectures and accommodations no one is disabled. Just so, if you assure genuine equal rights then marginalized identities should conceivably no longer exist.

Imagine the better conversations we all would be having.

This is my morning soapbox. Perhaps I’ve taken too much sinus medication. I’m a utopian Sudafed addict.

People don’t like it when you suggest that their Balkanized political identities are not entirely productive. I know. But if you need to have a social society you can join the Optimists Club. Or a good labor union.


Walking Swiftly

The Iowa folk singer Greg Brown has a line in one of his songs: "The world ain’t what you think it is/It’s just what it is."

How different I am when I remember to let the world open itself to me rather than trying to dominate experience with preconceptions.

There’s something about having a new guide dog that puts me in mind of this quiet lesson.

We walk together and trust that we will mutually take care of each other. We do this in the expectation that what’s ahead will be more interesting and viable than anything we might have supposed.

That’s poetry. If you were to write an equation it would be:

Experience minus expectation equals progress plus bliss

I know. It’s not the sixties anymore. No one is supposed to talk about bliss.

But I’m all for it.


Stepping Lively

Today was a balmy day for New York State with temperatures in the low 60’s and there was even some sunlight. I walked "in harness" this morning for the first time and again in the afternoon with Guiding Eyes "Nira" (whose photo I will soon upload to our blog) and as we strode together down a busy sidewalk in White Plains, a woman who was relishing the sight of this fast yellow Lab and a broadly smiling man said: "That dog sure likes its job!" We were sailing past her at a good clip. And I waved as we were sailing away with the pleasure both of recognition and of being recognized. Nira was expertly slowing, steering, working her way among pedestrians, head held high and wagging her tail. Me? I was wearing a U.S. Navy baseball cap that says: NAVY: Accelerate Your Life". We were surely accelerating today. It was a marvelous time "out on the ocean" and I can’t wait for tomorrow.


Dog Day Afternoon

I am pleased to announce that my new guide dog is "Nira"–a female yellow Labrador. I will be meeting her for the first time in about ten minutes.

All I know for sure is that she’s a tall, fast, and poised guide dog.

I feel a little like an adoptive parent waiting in the anteroom of the orphanage. Or maybe I feel a little like a Sweepstakes winner.

One thing’s for sure: I feel very lucky to be making her acquaintance.


Make It Strong, Please.

Over breakfast at Guiding Eyes I hear assorted stories about blindness.  How often one hears the refrain: "My eye doctor said, well now you’re blind, go home, there’s nothing more we can do for you."  I think that the national ophthalmologic societies should be having breakfast at the guide dog school.  Blindness isn’t a calamity unless the "professionals" make it so.  I drink coffee with people who have recently lost their eye sight and I’m reminded all over again just how clotted and befuddled our "normative" society is when it comes to blindness or disability in general.  Good God.  You’d think that these ophthalmologists are getting their scripts for communicating with their patients from Victorian novels. "I’m sorry but you’ve been struck blind by a force mightier than humankind.  You must now go and wander the forests of Germany." 

Thank the Lord there’s strong coffee here at Guiding Eyes.



Tomorrow, if all goes well, I will be united with my third guide dog. This will happen in the early afternoon. Once more the circle of blindness (at least for me) will be entered by a safe and reliable creature who was raised and trained by innumerable loving people. I’ve written about this in my memoir Planet of the Blind and I don’t think I can do more than reiterate that having a new guide dog is absolutely the "ultimate blind date". There’s a difference though for this dog will be poised and self reliant which is more than one can say about your average human blind date. They know what they’re doing at Guiding Eyes for the Blind.

By early afternoon I will have a remarkable four legged companion and together we will work over the next two weeks to earn each other’s trust and loving kindness None of us can claim any more for our relationships.

Blessings on the puppy raisers and the guide dog trainers and the superb staff here in Yorktown Heights, New York.

And thanks, Al Roker, for the temperatures which are in the mid sixties.

S.K. .

Hope for the Media

by Stephen Kuusisto

I teach English at The University of Iowa and some of my classes are
focused on disability in the literary arts. One book that I like to
give my students is the groundbreaking history of disability in the
movies The Cinema of Isolation
by Martin Norden. This book shocks students when they first encounter
it, for few realize that movies have featured disabled characters from
the very beginning of the film industry. What’s even more eye opening
is how poorly Hollywood has treated people with disabilities from day
one. The old footage rolls again and students see malevolent and
monstrous "cripples" for disability functioned in these old films as a
metaphor rather than just being a part of daily life.

When those early movies weren’t using people with disabilities as
figures of moral judgment they eagerly used them as low comic
characters whose afflictions were funny because the lame tried to walk
or the blind tried to do the work of the sighted. "Low comedy" means
humor that relies on slapstick or vulgarity. "The Three Stooges" are a
good example of low comedy. In turn, of course, "High comedy" uses
verbal sophistication and artful disguises to achieve its effects.
Shakespeare’s Measure for Measure or All’s Well That Ends Well are good examples of the genre.

What the students find out all too quickly is that first in movies,
and then in television, people with disabilities have been almost
uniformly presented as "figures" who represent immorality or
ineptitude. Between these two poles one also finds Victorian
representations of absolute purity like Charles Dickens’ "Tiny Tim" who
stands for the angelic compensations of suffering and whose presence in
the story is necessary if Scrooge is to be redeemed. Alas, Tiny Tim is
as unreal as all the other stock disabled characters in TV and film

When my students look for contemporary depictions of real people
with disabilities in the media they discover that the field is still
quite narrow. Some of them point to the current "reality TV" series "Little People, Big World"
on the Learning Channel. Others point to "Monk", a detective show that
features a leading man who solves crimes because he has an
obsessive-compulsive disorder. In the movies there have been some
notable triumphs over the past thirty years like "My Left Foot" and
"Children of a Lesser God" and students eagerly mention Marlee
Maitlin’s character on the hit TV show "The West Wing".

There have been some undeniable advancements in the representations
of people with disabilities in Hollywood and the TV industry.
Nevertheless it remains hard to find substantive mainstream reporting
about disability on network or cable TV. When disability does appear on
the nightly news or as part of a daytime interview program like "The
Oprah Winfrey Show" often presented as an "overcoming story"- a
narrative in which a person  with a disability is either cured by means
of medicine or spiritual belief, or in turn they are distinguished by
their ability to inspire others by successfully denying that they have
any kind of limitation. As any person with a disability can tell you,
we need better reporting.

Real people with disabilities are impatient for change and ready to
take their places in the media arts. I believe that our time is coming
– perhaps slowly, but surely.

Disability in the media is the topic of the next Disability Blog Carnival, to be hosted on Blog [with]tv Thursday, January 10.  JOIN US!

Submit your blog article to the next edition of
disability blog carnival using our carnival
submission form
. Past posts and future hosts can be found on our blog carnival
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Cross-posted on Blog [with]tv

Greetings from Guiding Eyes

After two canceled flights and a long day’s journey I arrived back at Guiding Eyes for the Blind last evening. I’m embarking on a fabulous adventure, training with a brand new guide dog. In twenty minutes I’ll be heading to my first full day of training–a humbling process for although I’ve had two previous guide dogs, the training has evolved and the dogs nowadays are trained to follow some new commands. Can an old blind guy learn new tricks? We shall most certainly find out.

Guiding Eyes is one of the nation’s premier guide dog training schools and my wife Connie and I used to work here before we moved to Ohio and then westward to Iowa City. The school has undergone some significant changes since Con and I were last here in 2000, most notably there’s a brand new student residence and a fabulous new dining hall and a beautiful new multi-purpose room for classes and events.

There’s also the "march of time" because of course the new guide dog trainers are ever younger. And they have new training techniques and I already feel like a slightly disreputable uncle whose  manners need to be seriously improved.

As always, the other students come from every corner of the United States and they are made up of new guide dog users and old timers; young folks and those of us who are middling old. There’s a nice camaraderie and I know I’ll be hearing  all kinds of disability related stories over the next 10 days. I’m immediately reminded that disability is entirely democratic in its discriminations: we are a diverse group from all kinds of backgrounds and we have only blindness in common. And soon we shall have dogs in common and that’s a beautiful fact. We will get our new guide dogs on Wednesday.

I got my first dog "Corky" when I was 39 and now I’m 52 and the veteran staff keep telling me that I look good and haven’t changed and aside from the decency of that premise, maybe in a small way I’m lucky to have had two good dogs to work with and travel alongside as a principle means both of being safe and staying young. Dogs after all are important for human physical and emotional well being.

I must go now into the busy day with its lessons and unimagined astonishments. Here’s to the good dogs and their human pals. 


Photo description:  Black & white of Steve and yellow Labrador "Corky".  This is the photo that was used on the cover of Steve’s memoir: Planet of the BlindWhile we only see this "headshot", Steve is actually lying on his left side with his face propped against his left hand.  He’s wearing tinted glasses.  Corky is sitting next to him in such a way that we see her profile, and because her head is higher than Steve’s because of their positioning, it almost looks as if she could be resting her head on top of Steve’s. Many have said that Steve looks like a young Paul McCartney in this photo.  Photo Credit: Marion Ettlinger

Spoons in the Snow

Almost thirty years ago I had the chance to hear the Argentine poet Jorge Luis Borges deliver the keynote address at a conference on the work of Vladimir Nabokov. The event was hosted by Cornell University and I rode a bus to Ithaca, New York from Geneva—a trip that took me about two hours. I was going through an unpronounceable personal crisis because I was losing the last of my usable reading vision and I couldn’t talk about it. I had been "legally blind" since birth but had managed to read with one eye by holding a large print page by my nose. I had survived college using this technique. I had also graduated from the University of Iowa’s "Writer’s Workshop" with a degree in poetry writing.

I had enough dramatic irony to know that my emotional vocabulary was failing me. I could write like other people. I could imitate Garcia Lorca or H.D. or Robert Bly but I couldn’t find the sub-rosa dialect of disability and I knew that I wasn’t finding much about this in the pages of The American Poetry Review or The Atlantic Monthly. All I knew for sure was that Borges was blind and he was slated to speak about Nabokov and I knew how to find the event on my own .

Thank you for this link to this post:
Borges on the Planet of the Blind

Continue reading “Spoons in the Snow”