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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 

I woke early and drank a glass of water…

There was a village in Finland when I was a boy…
You can’t escape intravenous comedy…
Now and then someone recommends a book…
Kid gloves should be “kind gloves”…
A friend called yesterday and shared an aria…
It’s been years since I last stood on my head…
It was in Berlin
Right there on the Alexanderplatz…
No one saw it…
Silly to think on it—
But I’ve always been happy
Even in the psychiatric hospital…
It’s a faint taste at first
Behind the tongue…

Thinking of Rousseau on a Rainy Morning

If like me you’re disabled you’ve probably thought about being cured. As I’m blind this would mean having 20/20 vision. I don’t think about it much, but when I do I picture myself on a motorcycle, letting it rip. This is a personal version of fool’s gold.

The idea of “cure” is painful for the disabled. Medicine says we must be fixed or be seen as permanent defectives. Most of us cripples have been told we’re faulty over and over. It’s not “cure” one wants, its freedom from being flawed and suspect in the village square. If I could see and take off on a Harley I’d still remember the struggles of this disability life.

**

Jean Jacques Rousseau had a dog named Sultan who accompanied him to England when his life was threatened in France. Poor broken Rousseau with his malformed urinary tract, cloying hypochondria and hot paranoia–also poor in cash, resolutely poor in friendships. Sometimes we think we understand him–we, the descendant cripples–those who spent fortnights alone in childhood and more than once. We who occupied our attentions with flowers and seeds. Rousseau had the triple whammy: his mother died when he was very young, then his father ran away. He was forced to learn the baleful adolescent art of beseeching strangers for protection and love. He was easily tricked into churches and bedrooms. And he was easily discarded. The cripples understand this.

No wonder he discarded neo-classicism for what others would call the romantic. No wonder Shelley and Byron adored him–passions of betrayal and resolution always feel the most authentic. Rousseau’s enemies substituted “savage” for “authentic” and prided themselves for calling him “uppity” which is of course what is generally done to passionate cripples. Small wonder Rousseau took up the matter of social consent among the governed.

**

Sultan lead him into the English countryside where he seldom encountered another soul. I love knowing this. A dog can stir and extend solitary human concentration which is the reward of stigma, but you must understand it in a canine manner–pay attention to what’s here and here; not yesterday; never tomorrow; and yes, a dog looks the other way when you take from your pocket a handful of French seeds and push them into British soil.

“So here I am, all alone on this earth, with no brother, neighbour, or friend, and no company but my own. The most sociable and loving of human beings has by common consent been banished by the rest of society. In the refinement of their hatred they have continued to seek out the cruellest forms of torture for my sensitive soul, and they have brutally severed all the ties which bound me to them. ”

He was in fact disabled by malformations of his nether parts and he had profound depression. Being a liminal figure owing to these conditions he was caste out by the congealing engines of 18th century normalcies. On this the aristocrats and the bourgeoisie could agree—the salon, the atelier, the coffee houses were not places to be troubled by the inconveniences of broken embodiments. Having a troubled body meant staying away—meant the asylums and hospitals. It meant living in the poor houses. Good bodies meant public bodies. Rousseau’s solitary journeying on foot is disability journeying. He was Basho, a travel weary skeleton.

Poor Roussea! He had porphyria which lead to abdominal pain and vomiting; acute neuropathy, muscle weakness and seizures; hallucinations, anxiety, paranoia—and as if these weren’t enough he had cardiac arrhythmias. He was by turns aggressive, provocative, contrarian, and yes, he was always ill.

Today in the disability arts community we talk of disablement as epistemology. We know altered physicality and neurodiversity offer unique and valued ways of thinking. What’s different now from Rousseau’s time is that the disabled are not as easily caste aside, and though this can be done (one thinks of all the micro aggressions the disabled invariably experience even now, arguing for accessibility, making their point for inclusion and respect against structural ableism) it’s no longer possible to lock the gates of Geneva on that annoying cripple.

On the subject of micro aggressions much of the Reveries of a Solitary Walker tells of the slights and the disdain Rousseau absorbed and encountered. He was in fact an unpleasant man. I too some days am an unpleasant man. Human rights and their advocacy demand it. Seldom does progress develop for polite societies. But I’ll add also that in Rousseau’s time there was no language for depression—the term itself comes from an age when treatment and acceptance are commonly understood. Instead it was called “melancholia” and it was considered a form of madness. You don’t have to read Foucault to know what happened to the mad though why shouldn’t one recommend it? In any event Rousseau lived in an age when mental illness was believed to be a moral failing. This sub-Cartesian idea has never gone away.

I’ll let Rousseau have the last word:

“Always affected too much by things I see, and particularly by signs of pleasure or suffering, affection or dislike, I let myself be carried away by these external impressions without ever being able to avoid them other than by fleeing. A sign, a gesture or a glance from a stranger is enough to disturb my peace or calm my suffering: I am only my own master when I am alone; at all other times I am the plaything of all those around me.”

Still Don’t Know a Thing

Still Don’t Know a Thing…

I didn’t watch Gilligan’s Island
But I read Basho
The suicide kid in a psych ward
Read “The Narrow Road to the Deep North”
“Sitting quietly, doing nothing,
Spring comes, and the grass grows, by itself.”

Outside the hospital
When the new grass came
His heart few up like a starling
And he read: “There is nothing you can see
That is not a flower;
There is nothing you can think
That is not the moon.”

Even now after fifty years
Not knowing the name of a tree
I know its sweet scent
And the bird flower moon
Of breath
“Hidden and unknown
Like the new moon
I will live my life”

If you dream like the blind…

You’ll see the Czar’s embroidered pillow
Gold and red by candlelight

The dreamer says: I can smother him
Just watch…and Boris Gudonov’s clock

Ticks just off stage
Like Braille

“C’mon,” says Carl Jung,
“You did it,”

“We gotta get back to the minotaur’s house…”
But the dream goes on

Alexander Palace
A hive, a loom

The despot growing cold, face up
Windows open

One can fly straight out

I woke early and drank a tall glass of water…

There was a village in Finland when I was a boy…
You can’t escape intravenous comedy but you can try
Now and then someone recommends a novelist
Kid gloves should be “kind gloves”—leave the goats out of it
A friend called yesterday to share an aria
It’s been forty years since I last stood on my head
I was in Berlin when I did it
Right there on the Alexanderplatz
No one noticed
“Nothing must happen to you / No, what am I saying, / Everything must happen to you / and it must be wonderful.”
—Bodil Malmsten
Silly to think on it
But I’ve always been happy
Even in the psychiatric hospital
It’s a faint taste at first
Behind the tongue

The fence falls over, wind rattles the house…

The fence falls over, wind rattles the house
Baking bread and the oven door groans
Don’t worry little dog, it’s just the entropy blues

**

Walking in a light rain
The word “cauterize” hits me
As in “cauterize” the poetry feet

**

My maternal grandfather built some of America’s first motor cycles and motor cars. He was wild. He aimed a shotgun at a porcupine and shot himself in the head. He said: “ricochet—just a flesh wound…”

**

Blind why do I like dusk so much?
Why does ether love morphine?

**

American happiness is a strange addiction, washed with medical narratives with their political and commercial directives to overcome what ails you, but you see, the psyche knows all along you can’t live that way.

**

Just the entropy blues
Good morning how are you?

If Dr. Seuss was Blind

Inside my shirt and under my skin you’ll find the crap the world put in:
“You’re blind you know—you don’t belong—you stay right here
Til mom comes along. Don’t mind the kids who taunt you so,
It’s just good sport, don’t you know?”
Worse: the teachers, feckless sorts
Dont want a kid who can’t play sports—
Can’t read chalkboards, do the math
Without some help to find his path—
How tireseome, the child who’s blind
Taking space inside their minds.
O but wait until he’s grown
And wants a job of his very own.
“You’re a burden with your demands
for access to things like any man
or woman working at Normal Inc—
you’re very presence makes us sink.
You’re a downer, bub,
Wanting the web,
Accessible notes and signs,
Or colleagues who are kind.
Go back to the the place where you belong,
Wherever that is, maybe Hong Kong—
Just don’t stay here and ask for stuff
We take for granted, enough’s enough.

Hobart and William Smith Colleges: Higher Ed, Disability, and Sufferance

If, like me, you’re disabled and you’ve spent considerable time in academia you know higher education isn’t genuinely affirming, or more precisely—the best the disabled can expect on any campus is a form of sufferance. We’re not quite “in” the agora but in some cases there may be less objection to our presence than in other instances. This is an accurate summation of the matter. And if, like me, you’ve persisted in the hallowed halls, you know how difficult it is to not let the ableism and its associated disdains take space in your head.

Superb books have been written on this subject, most notably Jay Dolmage’s “Academic Ableism” and one can plumb the history of sniffy exclusion at universities—a true depiction of intersectional discrimination—and even explore how the architectures and software are built around further rejection—but little changes. The cripples and those first generation immigrants who deign to arrive at the halls are held in suspicion and are admitted under suspicion. In this way disabled students and staff stand at the center of academic discrimination because we’re everyone. I know BIPOC students with disabilities who’ve been treated shamefully by faculty. I’ve seen administrators, alerted to these issues shrug.

It’s the academic ableism shrug I find most interesting. It seems to be built around the assertion in administrative circles that the ADA is “an unfunded mandate”—some kind of horse collar around the necks of colleges and therefore suspect and in rhetorical terms more burdensome than occupational safety regulations and the requirement to provide safe food to students. The resentment toward both the ADA and the people who need it is palpable.

I’m of an age when it’s hard to be astonished but the disability services webpage of Hobart and William Smith Colleges (my undergraduate alma mater) and a perfect example of sufferance lingo and discouragement. As a global blind traveler who’s familiar with disconcerting terrains, I know something about consternation, 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 site must have been constructed by attorneys—“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 is 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 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.