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Thank You Jeffrey Brown of PBS News Hour

Stephen Kuusisto to appear on PBS News Hour
Image: Logo of PBS News Hour

Tonight the PBS NewsHour will air a segment about my new book Have Dog, Will TravelThe piece features an interview with Jeffrey Brown whose reporting on literature and poetry is well known to book lovers across the nation. Jeffrey is also a poet whose first collection The News is available from Copper Canyon Press. In our time together we talked about poetry, civil rights, disability culture, dogs for the blind, the field of disability studies, and the power of literature to bring people together around social justice movements. And yes, there’s a lovely dog, Caitlyn, a sweetie pie yellow Labrador from Guiding Eyes for the Blind.

The program airs locally, in Syracuse at 7 PM. Check your local listings.

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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:
Amazon
Prairie Lights
Grammercy Books
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 

If You’re Disabled Avoid Hobart and William Smith Colleges

Note to the reader:

I first published this on my blog almost two years ago. Six months ago I spoke with senior administrators at Hobart and William Smith about these problems. I said I’d take this post down if they’d fix these things. Then, aiming to be a good fellow, I took it down in advance of what I imagined would be improvements. They’ve done nothing.
Read on…

I’m of an age when it’s hard to be astonished but there I was on the disability services webpage of Hobart and William Smith Colleges (my undergraduate alma mater) and I felt perplexity, confusion, and disbelief. If you’re keeping score and wish to assign values, perplexity and confusion are customary for me.

I’m a blind traveler, familiar with disconcerting terrains, but disbelief is another matter. Hobart and William Smith (or HWS as they like to call themselves) have a website that’s openly hostile to the disabled. Thirty years after the ADA I find this truly unthinkable. But there it is, stolidly online, blinking like a toad on a pillow. The site is so ugly and improbable it seems to ask: “how did I get here?”

The HWS website must have been constructed by attorneys but not those who know about disability. Instead they used “portcullis lawyers”–those whose job it is to keep undesirables from the gate.

Let’s put aside the lawyers for a minute.

The issue of inclusion for people with disabilities in higher ed is a matter of culture: far too many colleges and universities fail to understand people with disabilities represent a cultural movement. A cultural understanding of disability means we recognize students or staff with disabilities are our children, our sisters, daughters, sons, fathers and mothers, our veterans, our colleagues. Of course it means more than that: an academic awareness of disability means our nation’s institutions of higher learning have finally sensed that what they “do” they do for all and without oppositional and demeaning hand wringing. This position requires disability services and academic culture be progressively united as they should be.

The noted scholar of disability studies Lennard Davis writes in his book Bending Over Backwards a trenchant overview of the academic relativism that consigns disability to Diversity’s basement and argues for the critical importance of disability studies in higher education:

“The fact is that disability disturbs people who think of themselves as nondisabled. While most liberals and progressives would charitably toss a moral coin in the direction of the lame, the blind, or the halt, few have thought about the oppression committed in the name of upholding the concept of being “normal.” Consequently, one of the major tasks of this new field is to determine why this “fact” of disturbance exists, is accepted, and is promulgated. Disability scholars want to examine the constructed nature of concepts like “normalcy” and to defamiliarize them. David Pfeiffer writes that “normal behavior is a statistical artifact which encourages people with power and resources to label people without power and resources as abnormal.”’° Rosemarie Garland Thomson coins the term “normate” to make us think twice about using the term normal: “The term normate usefully designates the social figure through which people can represent themselves as definitive human beings. Normate, then, is the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them.”’

Normates thus enforce their supposed normality by upholding some impossible standard to which all bodies must adhere. To further demystify such terms, disability activists have called attention to the routine ways in which language is used to describe people with disabilities. Such activists refer to themselves as “crips,” as in the video documentary by David Mitchell and Sharon Snyder called Vital Signs: Crip Culture Talks Back, and choose words like gimp, geek, deaf and blind over more polite euphemisms. Expressions like “confined to a wheelchair” are being replaced by the more active “wheelchair user.” And expressions that use impairments metaphorically to convey a negative sense–such as “a lame idea,” “turn a deaf ear,” or “morally blind”–are being seen as the equivalent of racial epithets. This obsession with being normal has a history, as I attempt to show in my book Enforcing Normalcy)2 The use of the word normal in reference to physical bodies appeared in English merely one hundred fifty years ago, coinciding with the birth of statistics and eugenics. Before the nineteenth century in Western culture the concept of the “ideal” was the regnant paradigm in relation to bodies, and so all bodies were less than ideal. The introduction of the concept of normality, however, created an imperative to be normal, as the eugenics movement proved by enshrining the bell curve (also known as the “normal curve”) as the umbrella under whose demanding peak we should all stand. With the introduction of the bell curve came the notion of “abnormal” bodies. And the rest is history, including the Nazis’ willing adoption of the state-of-the-art eugenics funded and developed by British and American scientists, as Martin Pernick points out in The Black Stork.13 The devastating result was the creation of procedures for exterminating deaf and disabled people, procedures which were later used on the Jews, gypsies, and other “degenerate” races. But the Nazis were only the most visible (and reviled) tip of an iceberg that continues quite effectively to drive humans into daily frenzies of consuming, reading, viewing, exercising, testing, dieting, and so on–all in pursuit of the ultimate goal of being considered normal.

Disability studies demands a shift from the ideology of normalcy, from the rule and hegemony of normates, to a vision of the body as changeable, unperfectable, unruly, and untidy. Philosopher Susan Wendell sounds a clarion call that in the end provides a rationale for the disability perspective: “Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal’ and sane …. If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.”4″
–from Bending Over Backwards by Lennard J. Davis, New York University Press, p. 24

We can argue that “the body normal” is still culturally of considerable importance in administrative circles within American higher education. That disability clouds the picture is entirely understandable. Disfigurement is a terribly problematic matter if the goal on campus is simply to look good (whatever your social background).

Academic accommodations for learning disabilities, special provisions for assistive technologies or note taking or the like are still, to this very day, unconsciously imagined by many administrators and faculty as being somehow a matter of cheating the system.

Enter the Hobart and William Smith website which demands multiple forms be filled out by disabled students or prospective students: forms confirming diagnoses, forms for having a guide dog in a dorm, admonitions about where you can and can’t go if you have a service dog, even paper work about fleas.

Moreover the language (as I said above) is the lingo of gate keeping. It’s not designed to welcome the disabled but to discourage them. Forget that ten per cent of today’s college students have disabilities or that faculty and staff may have them, we don’t think you’re fit to enter our gate. (They do’t say this of course, they just make it clear the disabled are inconvenient and in turn they’re going to make being disabled even more inconvenient.)

That accessible facilities are not part of the cultural capital of Normates should not be surprising given the historical exclusivity of higher education. But that the problem of ADA compliance remains IS surprising especially in a time when we are seeing wounded veterans returning to colleges and universities in the greatest numbers since the years following World War II. Clearly it’s time for the Department of Justice to demand compliance with the ADA in higher education. And it’s time for regents, trustees, college presidents, and faculty senates to demand their campuses be audited for accessibility and adopt serious plans for reaching accessibility goals.
The final question and perhaps the most important is to ask how a college or university can be culturally inclusive for people with disabilities, a matter that if answered properly will take away the embarrassment and distress of having to ask for basic acceptance within the academic community.

At Syracuse University we have an office of disability resources. On its main page you will read the following:

“The Center for Disability Resources (CDR), formerly known as the Office of Disability Service’s (ODS) mission is to engage the University Community to empower students, enhance equity and provide a platform for innovation and inclusion. We achieve this by mitigating competitive disadvantages and environmental barriers that impact learning; by supporting faculty in the classroom and our colleagues across the university to strive for universal design and full inclusion. We provide individual accommodations when environmental barriers cannot be eliminated and assistive technology that fosters independent, self-determined learners.

The Center for Disability Resources embraces the concept of disability as diversity and is committed to creating a new context for disability; to redefine the term disability and the culture that surrounds it!”

Now consider this from the same site:

“Disability and accommodation requests should be evaluated using a commonsense standard, without the need for specific language or extensive diagnostic evidence. Using diagnostic information as a tool in reviewing requests for accommodation is different than using it for treatment. Determining accommodation requires a more limited range, level, and type of information. These two processes should not be conflated.

No third party information may be necessary to confirm disability or evaluate requests for accommodation when the condition and its impact are readily apparent or comprehensively described. No specific language, tests, or diagnostic labels are required. Clinicians’ training or philosophical approach may result in the use of euphemistic phrases rather than specific diagnostic labels. Therefore, reports that do not include a specific diagnosis should not be interpreted to suggest that a disability does not exist. The question is “Would an informed and reasonable person conclude from the available evidence that a disability is likely and the requested accommodation is warranted?”

Non-burdensome Process

Postsecondary institutions cannot create documentation processes that are burdensome or have the effect of discouraging students from seeking protections and accommodations to which they are entitled. This was clear even prior to the amendments to the ADA. The non-burdensome standard is applicable to initially establishing a relationship with the disability resource office and to setting up individual accommodations from institutional personnel, including course instructors. Students should not be required to bear responsibility for achieving access through cumbersome, time consuming processes.”

By contrast the Hobart and William Smith disability website id medicalized, legally ginned up, with nearly half a dozen forms that need to be filled out–forms that are entirely unnecessary and which cannot foster a welcoming environment.

I’ve been a noted guide dog user for over thirty years. I’ve written best selling books on the subject, have appeared on national and international television and I often travel abroad with the US State Department. That Hobart and William Smith would subject a blind student to bureaucratized humiliation is absolutely awful. But it’s also illegal in some cases. I note with some interest their assertion that a guide dog user might be prohibited from entering a laboratory. Wrong. Already decided. But I know how it works. Some professor didn’t like the idea. They put the passage in the mollify him. Or maybe her.

Now this is the part where truth will out. I’m not just an alum of Hobart and William Smith. I taught there for many ears. My father was a long serving president there during the 1970’s and early 80’s. I know a good deal about the place. I remember distinctly saying to a woman in the admissions office that they needed to do more for disabled students. She said: “no we do’t want to advertise that we let them in.” “Why” I asked. “Because it could ruin our ranking.”

That was thirty years ago. Just before the ADA. It looks like not much has changed. If you’re thinking about college and you have a disability do’t go to Hobart and William Smith. You have many more welcoming choices.

Viridity

Viridity

I want the boy who
first fell in love with poems
to come back

He was dishonest
He’d a stuffed hawk
Stolen from a glass case
And a billy club from old Boston…

No day after tomorrow, no tales
That couldn’t be right
And the bear of falsehood asleep in his forest
Spring was coming

I was something. If I was I

One Way

A few nights back
I dreamt of Robert Frost
Which meant a visit
To childhood
New Hampshire nineteen-sixty
Me blindly leaning
Into his pages
West running brook
Wood-cuts
Vision loss at five
So in love
With poems
The idea of them
Rare as animals from afar
Rain at the window
The walking wind

Of Kafka and a Blind Swim

“I can swim like the others only I have a better memory than the others. I have not forgotten my former inability to swim. But since I have not forgotten it my ability to swim is of no avail and I cannot swim after all.”

—Kafka

I’ve always liked this quote from Franz Kafka as it signifies the dilemma of blindness. I can see like the others, until I remember I’m not permitted. One then forgets his hoped for equality. Kafka would have perfectly understood the analogy. Only the best people are allowed to have the perceived advantages of sightedness or something like it. One knows the blind who have celebrity status, the mountain climber, the soul singer—they’re allowed an equal place in the public imagination. Most blind have not forgotten their former inability to swim.

Disability is excess, unbalanced, unrefined, offering troubles galore to the public nerve. Seeing is believing. Blindness is irrational. If you’re blind in the workplace and need accommodations you’re generally understood to be unbalanced.

Even Harry Houdini that old fraud knew how the audience loved the story of a man who could disable himself and get out of it without a lick of help.

What Does Disability Culture Mean?

Not long ago I was asked to contribute a poem to a literary magazine which was planning an issue on disability and the environment. This was an honor for when you’re a poet being sought after is a significant kind of recognition. Moreover the journal understood that the disabled have a critical perspective on the global climate crisis. The magazine arrived and its lovely with oversized glossy pages and lots of visuals and alas for me it’s impossible to read. As a blind reader I must scan printed material in order to turn it into accessible documents. It hit me then that disability culture is insofar as blindness is concerned not as inclusive as it ought to be. The majority of American poetry magazines, even if they have websites, are inaccessible to the blind. Poetry Magazine is a terrific culprit.

I ask therefore what does disability culture mean?

The Nucleus of a Syllable

This is personal—for me
And for you; if you
Show this to someone
It will be personal
For them—
It’s a Sumerian story
Sounds welling
In our throats
Falling down
The long slide
Of history
Each “A” and “O”
A gasp from
Lugalbanda and Ninsun
The parents of Gilgamesh
Who broke free
Of economy
To find the myth
Each syllable
Comprising
The world
Every gasp
Of dread or love
A planet

Once

I wrote a poem about the King of Sweden
I know nothing about Swedish royalty
That King was like the moon
I know nothing about the moon
I’ve heard the police
Pay strict attention to it
When its full
There are problems in the streets
I picture the King
With a falcon’s hood
Over his head
Waving to ghosts
Everyone needs
Minor amusements
When wars
Are described as heroic

Saarkikoski said…

Saarkikoski said
To me people are more like houses
Than the houses themselves
I know what he means
That ruined old man across the way
His sons dead in the war
Wife paralyzed
Or that’s how it went
Now no one’s there
The moon is new tonight
And looks like a boot
Tangible abstractions
Wood, stones, people
Let’s write a charm
For the houses, stones,
Disfigured spirits
The leafless branches…

Here Comes the Blind Boogeyman

“Witches are living projections of feelings that defy easy rationalization or reconciliation: amity and enmity, compassion and cruelty, self-confidence and fear.”

Witchcraft: A Very Short Introduction
Malcolm Gaskill

So too with blindness. From Jose Saramago to Anthony Doerr; from Blind Pew to Dickens blindness is the living projection of the sighted. And if you’re blind like me you get to live it. Every day.

The sighted are terribly weak. I think of them as akin to children who must step over the cracks on sidewalks lest they break their grandmother’s backs.

Seeing is the superstition. Blindness is just life.

Jesus, don’t get me started.

Amity and enmity. Stay away from the blind at all costs.

Blidness is pestilence.

I’m the blind boogeyman who’s going to steal your sighted life.