The Identity Pluck

My identity needs water. My identity is a dried turd. A 16th century one. Identity from “idem” to be the same. I’m the same as you. I’m not without my qualities but they’re significant only insofar as someone else also has them. My identity is troubled by this. It scratches and moans at all hours of the night. I’ve never met anyone like me. If I claim an identity aren’t I by the very act claiming a fantasy?

Well yes. Oscar Wilde said it: “Most people are other people. Their thoughts are someone else’s opinions, their lives a mimicry, their passions a quotation.” Given what Wilde endured in the name of originality who’d want to go beyond mere identity?

This is, in effect, what a free thinking human being should strive for: life beyond identity, not a sameness, a politburo, a glee club, a political party. This is scary. Institutions are against it. Churches, universities, corporations….Who dares to be naked?

Rousseau said: “I am not made like any of those I have seen. I venture to believe that I am not made like any of those who are in existence. If I am not better, at least I am different.”

Different frightens every school child. It scares the pants off of me. I want desperately to look like you.

Disability is interesting in this regard since no two people experience any disabling condition the same way. No. Two. People. In this way disability is not an identity. Disability is an enforcement.

Einstein wrote: “We experience ourselves our thoughts and feelings as something separate from the rest. A kind of optical delusion of consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us.”

Consciousness is predisposed to a sea sickness—staggering between separateness as ideation and the desire for sameness in the name of affection. Disability identity is enforced separateness (the social construction of normalcy) and a longing for others like us.

But no matter your disability there’s no one like you.

A disability by any other name would smell as sweet.

In this way I can’t be scripted by disablement. The name can’t help. The affections for likeness are fictive.

Audre Lorde, one of my favorite poets wrote: “I find I am constantly being encouraged to pluck out some one aspect of myself and present this as the meaningful whole, eclipsing or denying the other parts of self.”

Disability by Any Other Name

I’ve been disabled all my life and I hate the term. Beneath it, like Poe’s tell tale heart, is the pulse of loss. The “d” word is Karl Marx’s term: a 19th century mark for injured workers. It originally meant the lack of utility or earning power owing to a broken body. I prefer to be called a citizen.

That I’m a blind citizen should matter not at all. Did you know that blindness is nothing more than being born left handed? Disability is a false name which pulses underneath us and continues to cause human beings with diverse bodies terrible harm.

Of course there are cutesy efforts to fix the d word like putting the “dis” in parentheses to emphasize ability. This has always seemed to me like putting antlers on a cat. Diversions are seldom more than gestures and unless you’re using sign language gestures don’t mean much. Most if not all disabled will agree we’ve had enough of gestures.

The d word can’t describe me or the hundreds of d people I know. My band is made up of practical men, women, and children who have imaginations, wisdoms, loves, sorrows, tastes, and ambitions. For them the d is a horse collar—outdated, heavy. No one needs a horse collar anymore. Blind I’m disabled by the idea I’ve nothing to give. Disabled I’m doubly blind—not seeing becomes figurative worthlessness.

Citizen is better. I’d like my value to be understood as a matter of the hive. And yes, “value” is another tell tale heart. Value for whom? What does value mean? Why should the tax payer pay for a kid with Down syndrome to go to school?

Hitler called the disabled “useless eaters” to suggest the state shouldn’t support the unproductive. The presumption of competence, that the disabled have potential can’t co-exist in a purely industrial and essentialized vision of human bodies. It’s a terrifying vision. The d word is outworn, dangerous, and like the horse collar above, unsuited to a century when work itself is being reexamined.

I believe the future of work will involve more and more autonomous systems—robotics, driverless cars, supply chains that are fully automated. What will work mean for humans? It’s possible that deconstructing the d word will be important for everyone. Or it already is.

Of Confirmation Bias and Disability

Confirmation bias is of course universal. The self, whatever it means, assembles a mosaic of preconceived views. Some are descended from the cradle; some from bad teachers. No matter what we say about it CB depends on a lack of comic irony, the inability to probe the limits of one’s customary ideas. I’ve several bad thoughts and they them come from unhappy engagements with a legion of hard hearted able bodied authority figures. Throughout my life from Kindergarten to today I’ve been told my disability is a problem.

So in a spirit of admission, my biggest confirmation bias is that I tend to think most if not all able bodied people are ableists and since I’ve been hurt over and over I anticipate the hurt. This means the open hand of my soul is often empty.

It gets worse. My disability bias absolves me of digging deep both inside myself and “out there” among strangers. I am hereby admitting I can be lazy.

Don’t get me wrong. I’ve had it with rank and file discrimination against the disabled and I’ll go to my grave decrying it. This isn’t an essay about going soft. This is about the difference between essentialism and soulful ambivalence.

Confirmation bias assures that I’ll go on thinking all white men are racists; all heavy set people are comedians; all able bodied people hate me.

Cultural theorists say, often with muscularity, that confirmation bias is sagacious.

But my grief and yours coincide.

I cannot grow without confronting my pain.

People are scared of disability. They believe without examination in compulsory normativity.

Most people despise their own liberty.

The central tenet of fascism is that all people outside “the party” are miscreants.

Freedom is, in all its beauty, a pursuit which means pain.

I will not participate in minimizing my pain or yours. Not will I adopt a cheap script.

Able-splaining 101

If you’re disabled you know all about it. The apparently “normal” person who tells you what you need to know is legion. BTW this figure can be anyone. Despite feminism, women can be able-splainers just as often as men. I recall distinctly the associate provost at my university who told me that a software package was “robust” when it comes to accessibility when in fact it was junk. Able-splainers have no shame. All they need is a cocksure belief that the disabled are deficient which means of course we’re dismissible and voila!

But did you know that silence is also a form of able-splaining? When the disabled say something is unusable silence is often the best able-splaining of all. And so economical!
Nothing says “that’s the way it is little dude” better than a good old fashioned round of silence.

The other day I got able-splained in a new way which trust me is a remarkable thing as I’ve pretty much heard or not heard it all. An elderly professor accused me of being antisocial because he saw me scoop my guide dog’s waste into a plastic bag and then gently place the bag in a snow drift.

I was carrying a harness, a briefcase, holding a leash, and having a conversation with another faculty member all at the same time.

And there I was. Busted. Imperfect. A hater of humanity.

What he was really saying was I don’t belong on his campus.

You know, us cripples with our animals, breathing tubes, mechanical devices galore, our irregular invisible needs—how polluting we are.

Ableism likes the world clean.

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

Greeks, Spears, and Disability in Higher Ed

When Greeks (ancient) went to the theater they knew they were going to see a tragedy. Though comedy was sometimes performed it was rare. One can imagine a good old Greek saying, “I must get my fair share of abuse.”

To be abused was a matter of citizenship. With nuance and scruple one was reminded what being a good Greek (or a bad one) was all about.

In its pantheistic way the Hellenic world was engaged with suffering.

Disabled I’m eternally catching spears thrown by the able bodied. These spears have writing on them. On the arrow head it says, “I’m not like you.” On the shaft: “As God is my witness.” And if the spear has a ribbon it says: “Make them go away.”

Usually I catch the spears but sometimes they pierce me.

Because I remember the Greeks I know there’s no such thing as “me.”

I’m just one of the insistent ones at my university who says the materials distributed by the committee aren’t accessible; the websites and software packages used by the university are not accessible; the provision of equal opportunity for disabled students and staff is not readily apparent.

I catch spears for a living.

The difference between today’s disabled and any ancient Greek is we’re not afflicted by staid and superstitious ideas of fate.

We weren’t misshapen because of the gods.
We aren’t incapable of reason.
We don’t stand for anything other than embodied diversity.
Bodies don’t stand for anything other than the rich tableaux of human kind.
We do not represent the decline of society.
We don’t suggest the erosion of academic competence by our very presence.

Why is this so hard to absorb in higher education?

Jay Dolmage, author of several important books on disability and how we talk about it tells us that colleges and universities have always been built on the exclusion of certain kinds of bodies. In fact the university has functioned throughout history as an exclusionary gate to society. Dolmage writes:

“Disability has always been constructed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of “lower education” to justify its work and to ground its exceptionalism, and the physical gates and steps trace a long history of exclusion.”

Excerpt From: Jay Dolmage. “Academic Ableism: Disability and Higher Education.” Apple Books.

Creating versions of lower education and lowered expectations is in no small measure what universities have been about. Eugenics, the organized pseudo-science of social Darwinism had a strong foothold in American universities including Stanford, Harvard, and yes, Syracuse. Faculty at Syracuse engaged in a study with the infamous Cold Spring Harbor eugenics institute, a study which sought to prove Syracuse University coeds were deficient as bearers of offspring.

Exclusion and deficiency have long been manufactured by post-secondary education. Small wonder then that almost thirty years after the adoption of the ADA colleges and universities are so far behind when it comes to supporting and celebrating disability inclusion and disability rights.

Jay Dolmage again:

“…the alternative to planning for diversity is pretty dire, leaving access as an afterthought, situating it as something nice to be done out of a spirit of charity, or as something people with disabilities are being unfairly given. Without Universal Design, the alternatives are the “steep steps” that are set out in front of many people with disabilities, or the “retrofits” that might remove barriers or provide access for disabled people, but do so in ways that physically and ideologically locate disability as either deserving exclusion or as an afterthought.”

Excerpt From: Jay Dolmage. “Academic Ableism: Disability and Higher Education.” Apple Books.

The Greeks understood dire.

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

The Blind Whale, Part One

I am inside the blind whale. I should say it isn’t Melville’s whale nor is it Jonah’s brute. The blind whale is made of all the dreams of sighted people occurring now and simultaneously. It is easier to say what the blind whale is not: it isn’t a prospect; it’s not a fortune; it’s not a standard nightmare. It isn’t of the left or of the right.

**

Now is the blind whale distinct from blindness itself? Yes. Genuine blindness is just a fish. A small one. A guppy. It swims in shallows. By distinction the blind whale cannot be seen. It’s a visual man’s phantasm. Or woman’s. Women are also screwed up by the blind whale.

**

Of course sighted people are terrified of blindness but this isn’t that. If the damned blind whale has significance beyond furnishing my roof it must be this: it’s composed of the oneiric afterthoughts of all visual humans. I do not mean repressed fears. Forget Freud and Jung. I mean the dropped car keys and lost buttons in dreams.

**

Petty detail is what the blind whale feasts on. The krill swims straight into the maw. What I mean is “sighted petty” —the blind spot in a rearview mirror.

**

I’m inside a non-fictive creature designed haphazardly by the small frights of the sighted. This is a problem.

**

When reading “Moby Dick” I’m always struck by what Melville doesn’t have to say. For instance he needn’t say that the intricate industrial-scientific butchery of a whale carcass is merely bloody psychoanalysis misunderstood. Nor does he have to say, “always remember what’s under the boat.”

Stephen Kuusisto and HarleyABOUT: Stephen Kuusisto is the author of the memoirs Have Dog, Will Travel; Planet of the Blind (a New York Times “Notable Book of the Year”); and Eavesdropping: A Memoir of Blindness and Listening and of the poetry collections Only Bread, Only Light and Letters to Borges. A graduate of the Iowa Writer’s Workshop and a Fulbright Scholar, he has taught at the University of Iowa, Hobart and William Smith Colleges, and Ohio State University. He currently teaches at Syracuse University where he holds a University Professorship in Disability Studies. He is a frequent speaker in the US and abroad. His website is StephenKuusisto.com.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

Have Dog, Will Travel by Stephen Kuusisto

(Photo picturing the cover of Stephen Kuusisto’s new memoir “Have Dog, Will Travel” along with his former guide dogs Nira (top) and Corky, bottom.) Bottom photo by Marion Ettlinger 

I Can’t Tell You Who Lives Inside My Left Eye…

I can’t tell you who lives inside my left eye—
The better one which though blind
Has followed the parade all these years.

Is he bitter? Hungry? Does he laugh?
He reads weariness like a cipher.
He follows faint tracks of birds

Though he can’t see them.
This is to say he’s unreliable
But cunningly so

Fast in the mother-darkness.