Universal Design and Utopian Insistence

If you’re disabled you must explain yourself always. You’ll never get a medal for this. You’ll say I belong, I participate, I’m equal, though the phrases are gestural, utopian. You might as well say there are mermaids inside the sun.

A poem then:

Five crows in a dream last night
Faces of the old—a woman
Older than iron came near
The skin on her face
Like ice to a pond
But she was speaking
The language of crows
I saw it—the myth
Of speech—
She made no sound at all

**

I’m up early rummaging. Being disabled is a garage sale of the mind. I’m always moving things around. Seeing if things have more value in different settings. The salt shaker on a window sill feels better than when it was in the corner of a cupboard. Does this have something to do with what they call “universal design”?

Design: from Latin designare—to mark out, point out; devise; choose, designate, appoint. Later in English it comes to mean to form an outline or scheme. It’s a hopeful word if you bleach all the history out of it.

Universal is so hopeful it puts Shirley Temple to shame.

**

I think we can’t achieve universal design unless we understand what we mean by defect. I am not a defective sighted person. My friend D.J. Savarese is not a defective talking person. My pal William Peace is not a defective walking person though he gets around with a wheelchair.
Until we understand that defect or defective is as unhelpful as the mermaid inside the sun we’ll get nowhere. We will go on designing things that the majority of people cannot use.

**

The majority of people is a wonderful phrase. Too bad it’s unconnected to reality. It assumes that humans are static. Real people age, go blind, have industrial accidents, become wounded in wars, develop illnesses bases on genetics, have auto accidents, dive head first into shallow ponds, it’s a longer list than we’ve time for.

The majority of people are not defective, they are us.

It’s better I think to say we’re a planet of universal defectives.

Let’s call ourselves unifects.

**

A poem then:

Letter to Borges from London

When I was a boy I made a beehive
From old letters—dark scraps from a trunk,
Lost loves; assurances from travelers.
It was intricate work.
The blind kid and the worker bee lost whole days.
I made a library for inchworms.

Now I’m a natural philosopher but with the same restless hands.
Some days I put cities together—
Santiago and Carthage;
Toronto and Damascus.
If strangers watch closely, Borges,
They’ll see my fingers working at nothing.

In Hyde Park near the Albert Memorial and alone on a bench
I reconstructed the boroughs of New York—
Brooklyn was at the center, Kyoto in place of Queens.
This was a city of bells and gardens, a town for immigrants.
The old woman passing by saw my hands at work.
She thought I was a lost blind man, a simpleton,
Said, “Poor Dearie!” and gave me a quid.

Excerpt From: Stephen Kuusisto. “Letters to Borges.” Apple Books. https://books.apple.com/us/book/letters-to-borges/id564556086

Now I hate to sound like a high school English teacher but really, which of us is the more disabled in this poem—the blind guy thinking or the old woman?

The blind guy has design. He’s imagining better cities.

The old woman, who we’ll say has a tender heart, believes in the 19th century social construction of disability. In her unexamined view, the disabled belong in special places, are helpless, and need charity.

It’s worth remembering that this 19th century view required a design to begin with.

**

Here’s some helpful prose from the National Disability Authority in Ireland:

“Universal Design is the design and composition of an environment so that it can be accessed, understood and used to the greatest extent possible by all people regardless of their age, size, ability or disability. An environment (or any building, product, or service in that environment) should be designed to meet the needs of all people who wish to use it. This is not a special requirement, for the benefit of only a minority of the population. It is a fundamental condition of good design. If an environment is accessible, usable, convenient and a pleasure to use, everyone benefits. By considering the diverse needs and abilities of all throughout the design process, universal design creates products, services and environments that meet peoples’ needs. Simply put, universal design is good design.”

This is excellent.

The problem arises, especially in higher educational settings, when people are asked to consider the diverse needs and abilities of students.

University faculty and administrators are not skilled when it comes to thinking about diverse learning styles or needs. In historical terms the university is built on a model of exclusion, a narrow model, one which suggests quite openly that only certain bodies and minds need apply.

Jay Dolmage writes in his wonderful book “Academic Ableism: Disability and Higher Education”:

“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.”

Without universal design in classrooms, curriculum, teaching methods, websites, the university creates a de facto “lower education” system. If the blind student has to struggle to get accessible books; the wheelchair user can’t sit in the front of the room; the autistic student can’t use the proper accommodations for her needs, then the educational system is exclusionary. Let’s be clear: there are some faculty and deans who like it this way, just as they like lots of step steps that mark off the university as a place of climbing and advantage.

Colleges and universities are the least disability friendly places in the United States. The average airport is more accessible and engaged with design.

In order to have universal design in higher ed we must have inclusive education in mind when we teach.

**

I’m a blind college teacher. There should be nothing remarkable about this. Yet my daily presence haunts the academy. At all three universities where I’ve held tenure I’ve met obstacles to my participation in everything from meetings, classroom teaching, library research, online systems, even simple sporting events. All these basic things have been largely blocked.

Bad as these stumbling blocks are, and I promise you they’re lousy, what’s worse is the extraordinary degree of ableism I’ve met over the course of my roughly thirty year teaching career. Setbacks are one thing, perhaps even to be expected (at least initially) but prejudicial behavior is worse and I’ve experienced it over and over again. I’m a well known blind person. I have managed despite these problems to achieve “senior status”—that necrotic term for full professors.

Yet I’m not a full professor at all. I’m essentially a steerage passenger on a luxury liner, one who has wandered onto the wrong deck. This analogy should be ridiculous but it isn’t.

I’m still waiting for accessible “on boarding” materials at Syracuse University though I came there eight years ago. I asked for them four times. Because I’ve never received them I know less about the place where I work than almost everyone.

Getting accessible research materials in a timely way is grueling and often impossible yet I’m expected to teach as much as anyone else—oh, and also to be a leader in my field.

A colleague criticized me not long ago for speaking out about accessibility problems, saying, “you set back our reputation.”

In the meantime disabled students tell me almost weekly how they’re patronized by faculty and how difficult it is for them to get the help they need to succeed. What do I do? I complain. All too often my reward for speaking “behind the curtain” to multiple administrators about access problems is that I’m essentially conceived of as a malcontent. The eye rolling says it all: I should go back to steerage immediately.

My “non-disabled” faculty colleagues are not generally reliable allies. Even the ones who theorize disability and confront the social and economic history of disablement are seldom on the front lines when it comes to speaking up. Can’t get into the famous basketball arena with your service dog? That’s too bad. We’re all going to the game tonight.

A famous scholar once wrote about the “spoiled identity” the disabled are forced to endure—have been forced to suffer—every day. The word for this is stigma and everyone who hails from a historically marginalized background knows what it feels like. There’s a moue of unhappiness at the sight of you. Many sighted people think the blind don’t know it when it comes but we do.

Lately blind students have been filing civil rights complaints against colleges nationwide. I have not done this because I keep thinking my persistence and whatever in me passes for eloquence will pay off.

But you see, there’s the problem. I want a broad coalition of faculty to speak up.

In order for this to happen we must educate faculty about inclusive education as a human right and underscore the central place of universal design in that expectation.

**

Why is the rhetoric of diversity and inclusion at universities invariably so wooden and dead one would rather succumb to the prolixity of self help manuals? Give me Leo Buscaglia over prose exhorting the building of individual competencies or better, let’s imagine collective talent and free students (and staff) of the corporatized idee fix of the happy happy individual. If we’re to be honest we should admit universities are competitive and structurally opposed to whatever is meant by inclusion. (I like Paolo Freire’s sense of it, grass roots, promoting literacy for all, but on the American campus the term seems to mean—“tag along” as if we’re all going for a nice walk and you’ve been invited, lucky you.)

Lucky you indeed. It’s estimated that almost three quarters of disabled college students fail to graduate. What was it? The food? Must have been the chow. Yes, inclusion stops at the classroom door; stops at the inaccessible website; stops when the disability services office posits there are just a few hoops you have to jump through to get accommodations and you better follow the procedures exactly or your semester will go down the drain faster than your costume jewelry. Structurally speaking disability is to inclusion as mice are to kitchens.

At most universities and colleges disability isn’t included under the rubric of diversity. As a former administrator once said in my presence: “we don’t want people to know we have learning disabled students, it will affect our rankings.”

Talk about “Typhoid Mary”—disability might be catching! But back to the rhetoric. Consider the following, a fairly typical “letter” which a prospective college student must give to a physician in order to receive accommodations on campus:

Please provide the following information under separate cover and on practice letterhead. The authorized release of information is to include but not be limited to the following:

1. Presenting diagnosis(es) utilizing diagnostic categorization or classification of the ICD or DSM IV. Diagnoses should indicate primary, secondary, etc., and significant findings, particularly in respect to presenting problems.
2. Date the examination/assessment/evaluation was performed for the presenting diagnosis, or if following the student for an extended time, date of onset and date of an evaluation of the condition that is recent enough to demonstrate the student’s current level of functioning.
3. Tests, methodology used to determine disability. PLEASE do not send copies of the student’s medical records.
4. Identify the current functional impact on the student’s physical, perceptual and cognitive performance in activities such as mobility, self-care, note taking, laboratory assignment, testing/examinations, housing conditions/arrangements. Is this condition temporary? If temporary, what is the expected length of time to recovery?
5. Describe any treatments, medications, assistive devices/services the student is currently using. Note their effectiveness and any side effects that may impact the student’s physical, perceptual or cognitive performance.
6. Recommendations for accommodations. Explain the relationship between the student’s functional limitations and the recommendations.
7. Credentials (certification, licensure and/or training) of the diagnosing professional(s).

This information is kept confidential except as required by law.

**

Again, the prose above is standard boilerplate. It’s what’s for breakfast. If you have a disability and want to go to college you’ll need to be medicalized and sanitized. This is what passes for accommodation language at matriculation for most university students. Get a doctor or a psychologist to affirm you are indeed disabled—moreover, ask a medical professional to articulate “for you” what you will need in order to succeed in higher education. The falsity of the claim—that a standard MD or Ph.D. knows much about disability and it’s circumstances is nearly laughable but not quite. Inclusion is in the balance. Let’s see your disability certificate kid. Let’s see what it says we “have to” do for you. Do you feel included? What’s that? Not quite? Perhaps you have a bad attitude.

A campus that’s inclusive is accommodating because it’s classrooms, it’s digital domains, it’s syllabi, it’s assignments, it’s library, all are “beyond compliance”—which in turn means no one should need a letter from a doctor or a specialized office with its reliance on “treatments” and “functional impacts” and “cognitive performance” and the like. This language by its very nature is not inclusive nor is it meant to be—it’s designed to weed out students who might be tempted to fake a disability, because lord knows, maybe extra time when taking a test will give certain underachievers an advantage. I know of no other area of diversity where one’s provenance and authenticity must be vetted and confirmed.

**

Back to universal design— from the National Disability Authority in Ireland
it is:

The design and composition of an environment so that it may be accessed, understood and used
To the greatest possible extent
In the most independent and natural manner possible
In the widest possible range of situations
Without the need for adaptation, modification, assistive devices or specialised solutions, by any persons of any age or size or having any particular physical, sensory, mental health or intellectual ability or disability, and
Means, in relation to electronic systems, any electronics-based process of creating products, services or systems so that they may be used by any person.

Universal Design should incorporate a two level approach:

User-Aware Design: pushing the boundaries of ‘mainstream’ products, services and environments to include as many people as possible.
Customisable Design: design to minimise the difficulties of adaptation to particular users.

Viewing Universal Design at the Micro Level

A single design feature or a simple product, designed so that it can be used by as many people as possible.

At this level, the designer is not expected to find one design solution that accommodates the needs of 100% of the population, as Universal Design is not one size fits all. Rather, designers are urged to explore design solutions that are more inclusive; those designs that push the boundaries as far out as possible without compromising the integrity or quality of the product.

If more than one option is available for a design feature, choose the more inclusive feature. For example, when installing a handle on a door, it is always better to opt for a lever handle, rather than a door knob, as the lever handle can be opened using the elbow or a closed fist, benefiting people carrying shopping bags as well as people with limited strength in their hands.

Viewing Universal Design at the Macro Level

At this level the designer has the opportunity to combine accessible and usable design features, with customisable or adaptable features, alongside more specialised design solutions that deal with the most extreme usability issues (see levels 1-3 above).

By stepping back from the individual features and looking at the product, service or environment as a whole, designers are in a position to investigate alternatives providing equivalent experiences to users.

Examples include a user-friendly website that meets web accessibility initiative’s (wai) web content accessibility guidelines 2.0 (wcag 2.0), has a customisable user interface, and is compatible with assistive technologies.

From micro to macro, Universal Design has implications for the design of any single feature of a product, service or environment, as well as the design of that product, service or environment as a whole.

The 7 Principles of Universal Design were developed in 1997 by a working group of architects, product designers, engineers and environmental design researchers, led by the late Ronald Mace in the North Carolina State University.The purpose of the Principles is to guide the design of environments, products and communications. According to the Center for Universal Design in NCSU, the Principles “may be applied to evaluate existing designs, guide the design process and educate both designers and consumers about the characteristics of more usable products and environments.” 
Principle 1: Equitable Use
Principle 2: Flexibility in Use
Principle 3: Simple and Intuitive Use
Principle 4: Perceptible Information
Principle 5: Tolerance for Error
Principle 6: Low Physical Effort
Principle 7: Size and Space for Approach and Use

**

The issue of inclusion for people with disabilities in higher ed is a matter of culture: far too many colleges and universities fail to imagine that people with disabilities represent a cultural movement. (Let’s leave aside for the moment the powerful statistical urgencies represented by the finding that nearly 10 per cent of matriculating freshmen are self-identifying as having a disability.)

A cultural understanding of disability means at its very core that students or staff with disabilities are our children, our sisters, daughters, sons, fathers and mothers, our veterans, our colleagues. But it means more than that: an academic or curricular awareness of disability means that our nation’s institutions of higher learning will finally sense that what they “do” they do for all and with no oppositional and expensive and demeaning hand wringing. Such a position requires that disability services and academic culture–matters of curricular planning and cultural diversity be wedded as they should be.

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 

Disabled and Alone on Campus

I’m a blind professor and the other faculty don’t know me. Oh they recognize me alright but that’s a different matter. One may acknowledge any sign—a traffic cone or ceremonial ribbon—they’re designed for limited provenance. “Stop!” “Go!” “Ignore!” My blindness (and that of each visually impaired student I know) is a sign to be ignored.

An icon is a sign that calls for reflection: the Statue of Liberty or the holy cross. Unfortunately the disability access signs one sees in parking lots and alongside electric doors are not icons. They designate “access” which means “here’s how you get in” but nothing more. For the non-disabled faculty these signs mean: “You’re here. Now don’t ask me to think about you.”

When a sign is just a sign it allows for habitual overlooking. Scofflaws know this. I’ll never forget a rough edged student at the University of Iowa who told me speed bumps had no meaning to him. (He wasn’t speaking metaphorically.)

In higher education disability access signs are advertisements to the faculty to ignore the disabled.

Consider my story (such as it is): I teach now at Syracuse University where I hold a prestigious professorship. I’ve been tenured at the University of Iowa and The Ohio State University. I am, by all measures, “having” a distinguished career in academe.

What’s ironic as hell is that these institutions have not been hospitable, though I’ll give a shout out to Ohio State because they’ve a progressive and talented ADA Coordinator named Scott Lissner who was always there to help me and all other disabled solve accessibility dilemmas.

But this has not been the case elsewhere and over the past few weeks I’ve struggled to get accessible job related documents just as I’ve struggled almost every month over the course of my nearly eight years at Syracuse University.

One of the ironies at Syracuse is that the university was in the forefront establishing the field of Disability Studies some thirty years ago.

When I tell faculty (who are largely without disabilities, or at least none they’ve publicly declared) about my problems I’m mostly greeted with shrugs. Sometimes I get a note saying “that’s too bad.”

And these are the progressive faculty who should care.

Silence means that accommodation signs are just there to be ignored.

Moreover, as every disabled person involved in higher education knows, if you keep speaking up about inaccessibility you’ll be labeled a malcontent.

Pejorative labeling attaches to accessibility signs like lamprey eels to fish. “She can’t get accessible materials because she’s difficult somehow. We all know that.”

Inaccessible software; inaccessible PDF documents; inaccessible handouts in meetings; inaccessible video conferencing and presentations; building after building without accessible directories; a bureaucracy without a system for resolving these issues….these are the daily realities for the blind in higher education almost everywhere.

The silence of faculty around the nation about disability is a direct reflection of the privilege most have—not needing accommodations themselves they’re free to overlook the signs on buildings. They’re just signs, not icons.

On Critical Thinking, Disability, and the Academy

One of the ironies about the current state of academe is that universities propose to introduce students to what is called “critical thinking” as if most teaching faculty are available and capable to do this very work. I remember a biology professor wagging his finger in my face because, he said, biology students really don’t need to know how to write. That he was a well regarded professor made the moment doubly remarkable. “Don’t you want your students to be successful grant writers?” I asked. “You don’t need to take writing courses to do that!” he sniffed. Opposition to writing and the teaching of same is fundamentally a resistance to the teaching of nuance, scruple, irony, and pesky associative questions like “why is this problem interesting; confounding; worthwhile; perhaps even utopian?” Whatever we mean by the term critical thinking behind the term must lie a hope that students will bloom beyond being students. If this isn’t your hope as a member of the professoriate—which is to say a wish that your students will master their own curiosities no matter their chosen profession, then you’ve no business teaching. And there. I’ve said it. I believe far too many faculty are insufficiently inclined to engage with students as potential contrarians which is what we all should be after.

How many department meetings have I attended over the years? Lordy. And scarcely a discussion about students or what we hope they’ll gain. Worse perhaps is the cynical shorthand of “outcomes assessment” that’s been adopted for inclusion on syllabi and which now occupies senior administrators from the accreditation complex—themselves former faculty who’ve little experience teaching critical thinking. In this way the contemporary academy is like the singsong monkey that chases its tail around the flagpole. There’s a lot of talk about critical thinking and little actually happening. Instead there is essentialism about any number of topics. Here’s a popular one: Capitalism is the source of all suffering. I think one should say it’s the source of many problems. But critical thinking demands probing the assertion: was there ever a civilization without some kind of capitalism? Are there capitalist countries where the people are happy? These questions are not popular in essentialist teaching circles. Essentialism requires agreement, a prescriptive shared narrative. I know disabled students who think all able bodied citizens are their enemies and that able bodied people believe in compulsory able-bodiedness.

Remember “The Combahee River Collective Statement” of 1977?

“This focusing upon our own oppression is embodied in the concept of identity politics. We believe that the most profound and potentially most radical politics come directly out of our own identity, as opposed to working to end somebody else’s oppression.”

As Mark Lilla puts it in his book “Once and Future Liberal” the left, following Reagan’s election failed to unite and instead augured into separate coverts of bitterness:

“Instead, they lost themselves in the thickets of identity politics and developed a resentful, disuniting rhetoric of difference to match it. ”

**

Three weeks ago I watched the televised memorial for President George H.W. Bush. I found the occasion moving. Bush 41 signed the Americans with Disabilities Act into law in 1990 and that moment still stands for me and many others as a watershed in American politics as it was perhaps the last time the left and right worked assiduously to promote the well being of millions upon millions of citizens. The law was fiercely opposed then and still is now. That Bush signed it says a good deal about his willingness to resist calls from the Chamber of Commerce to let the disabled continue living without rights as they’d always done.

When I posted on social media my appreciation for Bush’s role in promoting the ADA I was besieged by Facebookers and Twitterers informing me Bush was a moral coward, a bigot, a war criminal, a homophobe, a liar, a groper—all to edify me. Having said he’d done something good I must be obtuse or utterly ignorant about his life in its entirety. This is the sloppiness of identity politics—its execrable cheapness of thought, adopted formally at the Combahee conference and now a laziness disguised as moral advantage. If critical thinking is to be taught let’s ask what it might actually mean.

I’ll venture it may require a willingness to give up first response finger wagging—the “gotcha” which is now everywhere on both the right and left. Someone who teaches disability studies told me on Facebook (in response to my observation that much about racism I find hard to absorb having grown up in a very liberal environment) I “must be” racist as I’m white. Her proof? I’m soaked in white privilege. Gotcha works this way. It substitutes paradigms within an argument. Example: “You believe you’ve a personal identity which is moral and possesses Enlightenment values of nuance and rationality but actually you’ve no personal identity since postmodern culture assures this. Therefore you can’t be immune to racism, if say, you’ve gotten a bank loan at any time during your life.”

If you’ve white privilege you’re a de facto racist. The essentialism behind the argument—the confirmation bias—is that this has been entirely decided by people who recognize oppression better than I do.

Forget that I grew up blind; have lived on food stamps and unemployment and have spent time living in Section 8 housing. Dispose of the fact I’ve been discriminated against in education and employment over and over during my “career”—that fancy term for what the Buddhists call the “meat wheel.”

That I’ve been harmed owing to disability doesn’t change the fact that I have advantages over others. If you believe this than you also have to imagine that human beings are just flies in amber, mere products of ancient entrapments with no hope of escape.

**

Why is this “gotcha” so attractive?

Fundamentalism is easier than scruple.

Amos Oz died this week. I’ve been reading his book “Dear Zealots” with considerable interest. He is at pains to understand how fanaticism works and why it’s the illness of our time. He writes:

“Fanaticism is not reserved for al-Qaeda and ISIS, Jabhat al-Nusra, Hamas and Hezbollah, neo-Nazis and anti-Semites, white supremacists and Islamophobes and the Ku Klux Klan, Israel’s “hilltop thugs” in the settlements, and others who would shed blood in the name of their faith. These fanatics are familiar to us all. We see them every day on our television screens, shouting, waving angry fists at the camera, hoarsely yelling slogans into the microphone. They are the visible fanatics. A few years ago, my daughter Galia Oz directed a documentary film that probed the roots of fanaticism and its manifestations in the Jewish underground.

But there are far less prominent and less visible forms of fanaticism around us, and perhaps inside us, too. Even in the daily lives of normative societies and people we know well, there are sometimes revelations, albeit not necessarily violent ones, of fanaticism. One might encounter, for example, fanatic opponents of smoking who act as if anyone who dares light a cigarette near them should be burned alive. Or fanatic vegetarians and vegans who sometimes sound ready to devour people who eat meat. A few of my friends in the peace movement denounce me furiously, simply because I hold a different view of the best way to achieve peace between Israel and Palestine.

Certainly, not everyone who raises a voice for or against something is suspected of fanaticism, and not everyone who angrily protests an injustice becomes a fanatic by virtue of that protest and anger. Not every person with strong opinions is guilty of fanatic tendencies. Not even when such views or emotions are expressed very loudly. It is not the volume of your voice that defines you as a fanatic, but rather, primarily, your tolerance—or lack thereof—for your opponents’ voices.

Indeed, a hidden—or not so hidden—kernel of fanaticism often lies beneath various disclosures of uncompromising dogmatism, of imperviousness and even hostility toward positions you deem unacceptable. Righteousness entrenched and buttressed within itself, righteousness with no windows or doors, is probably the hallmark of this disease, as are positions that arise from the turbid wellsprings of loathing and contempt, which erase all other emotions there is nothing wrong with loathing in and of itself: in Shakespeare and Dostoyevsky and Brecht, Chaim Nachman Bialik and Y. H. Brenner and Hanoch Levin, we find a stinging component of loathing. A blazing component—but not an exclusive one. In the works of these great writers, loathing is accompanied by other feelings, too—by understanding, compassion, longing, humor, and a measure of sympathy.)”

**

If the American university hopes to embrace critical thinking it must examine righteousness entrenched. In literary writing courses we talk of comic or dramatic irony—those moments when a literary writer asks “what do my characters or my narrator know “now” that they did not know even just a few moments ago? In a dramatic stage play comic irony is when the audience knows more than the figures on stage. All of Shakespeare’s comedies depend on this device.

If the American university hopes to embrace critical thinking it must offer courses that show students how to work across divides. My suggestion is to look at the history of the Americans with Disabilities Act—it has a long back story, driven by veterans wounded in foreign wars, pushed by political activism—cripples crawling up the Capitol’s steps; grassroots politics of the best and worst kind; and perhaps most remarkable of all its demonstration that intellectual and dogmatic buttresses can come down just as architectural barriers can.

If the American university wants to embrace critical thinking it should look at the peacemakers.

Amos Oz again:

“There are varying degrees of evil in the world. The distinction between levels of evil is perhaps the primary moral responsibility incumbent upon each of us. Every child knows that cruelty is bad and contemptible, while its opposite, compassion, is commendable. That is an easy and simple moral distinction. The more essential and far more difficult distinction is the one between different shades of gray, between degrees of evil. Aggressive environmental activists, for example, or the furious opponents of globalization, may sometimes emerge as violent fanatics. But the evil they cause is immeasurably smaller than that caused by a fanatic who commits a large-scale terrorist attack. Nor are the crimes of the terrorist fanatic comparable to those of fanatics who commit ethnic cleansing or genocide.
Those who are unwilling or unable to rank evil may thereby become the servants of evil. Those who make no distinction between such disparate phenomena as apartheid, colonialism, ISIS, Zionism, political incorrectness, the gas chambers, sexism, the 1 percent’s wealth, and air pollution serve evil with their very refusal to grade it.

Fanatics tend to live in a black-and-white world, with a simplistic view of good against evil. The fanatic is in fact a person who can only count to one. Yet at the same time, and without any contradiction, the fanatic almost always basks in some sort of bittersweet sentimentalism, composed of a mixture of fury and self-pity.”

“The urge to follow the crowd and the passion to belong to the majority are fertile ground for fanatics, as are the various cults of personality, idolization of religious and political leaders, and the adulation of entertainment and sports celebrities.

Of course there is a great distance between blindly worshiping bloodthirsty tyrants, being swept up by murderous ideologies or aggressive, hateful chauvinism, and the inane adoration of celebrities. Still, there is perhaps a common thread: the worshiper yields his own selfhood. He longs to merge—to the point of self-deprecation—with the throng of other admirers and unite with the experiences and accomplishments of the object of worship. In both cases, the elated admirer is subjugated by a sophisticated system of propaganda and brainwashing, a system that intentionally addresses the childish element in people’s souls, the element that so longs to merge, to crawl back into a warm womb, to once again be a tiny cell inside a huge body, a strong and protective body—the nation, the church, the movement, the party, the team fans, the groupies—to belong, to squeeze in with a crowd under the broad wings of a great father, an admired hero, a dreamy beauty, a sparkling celebrity, in whose hands the worshipers deposit their hopes and dreams, and even their right to think and judge and take positions.

The increasing infantilization of masses of people everywhere in the world is no coincidence: there are those who stand to gain from it and those who ride its coattails, whether from a thirst for power or a thirst for wealth. Advertisers and those who fund them desperately want us to go back to being spoiled little children, because spoiled little children are the easiest consumers to seduce.”

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 

Of Ableism and the Lucky Rabbit’s Foot

Life proceeds without plot no matter you went to a good school or studied well—a matter which Americans have difficulty absorbing. This is why people in the United States don’t generally believe in luck.

I’ll venture in some circumstances I’m fortunate. I married well; I’ve more than a few scrupulous friends; I’ve a job. The job is no small thing given the unemployment statistics with regard to disability.

Still I will say I’ve been lucky. I did not make my own luck. This I do not believe. This I do not believe it at all. As Christopher Hitchens once put it: “It’s one thing to be lucky: it’s another thing to admit that luck has been yours.” This is the other thing.

You may have talent. Perhaps you imagine it was your inheritance. Your skill with musical composition comes down from your great great grandmother. It’s all a matter of epigenetics. You imagine this DNA bequest isn’t luck until things go badly and when they go very badly you curse your ancestors. As a general rule Americans only curse their ancestors when they become ill. The greatest American irony of all—each unassuming citizen believes he or she is secretly bred monarchial, a thing Huck Finn encounters when he meets the Duke and Dauphin.

So health isn’t a matter of luck; fortune less so; skill of any kind is scientifically deterministic. Karl Marx never had a chance in the USA as Americans hold that capital is not acquired on the backs of the less fortunate. Fortune was always yours even when it wasn’t apparent and admissions of luck take the hind most.

I am on about this, I admit, because I’ve had it with academics and/or artists who can’t admire the sheer improbability of their success and thereby think the disabled are not only malformed but should be seen as figures deserving (or not deserving) charity.

Ableism is the consequence of a broad misunderstanding or disavowal of luck which is why it’s dangerous for all, not just the disabled. It’s not a far jump from “I earned my money by the sweat of my brow” to “I absolutely deserve to have a designer baby and a designer death.” To dwell on luck is to admit life proceeds without plot as we’ve already noted which is a terrifying idea. Life is life and not what we may wish it though wishes can be admirable and striving is noble.

Now I’ve said I’m lucky. Forty years ago a teacher saw my talent for writing. Professor X encouraged me. I wrote. More professors encouraged me. I wrote some more. Kept at it. Was blind and scarcely employable but writing I could do. People who were not me or my parents said I had writerly capacities. My professional life has been the product of a village, not a matter of tirelessness or Bohemian ambition.

Ableism imagines the singularity of talent or health—beauty or success is the de facto state of affairs of embodiment. If you’re not in the group you’re not of the elect. This is important: not of the elect means the wrongness of you is ordained—either by God or DNA. Ableism imagines that the good body is the proper one; the deformed body is a poor inheritance. Ableism can only admit luck when the healthy say upon seeing the disabled: “there but for the grace of God go I”.

Bioethicists now argue whether disability viewed as a social construction and therefore a component of all humanity “should” or “should not” be so conceived. If disability isn’t exceptional and is part of the “new normal” then the utilitarian prospects for all humankind are diminished—so the argument goes—for we’ll stop trying to cure diseases and poor health will be perfectly OK. The few opposing bioethicists say, “disability ye will always have with ye, isn’t it best to include it in our best thinking?”

But you see, it’s the same luck argument all over again. Who gets to be lucky? How much should we acknowledge it? Isn’t it best to imagine you’ve made it on your own?

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 Ableist Shrug at Licorice University

Ableism: I’m the problem. I didn’t get cured. Didn’t stand up. Couldn’t read the books with my peepers. “Jeepers Creepers, where’d you get those peepers?” 

Good eyes are productive, produce results; bad eyes, get cured baby! 

Ableism: a term no one likes. Like licorice. (No one really likes licorice. Studies have shown this to be true.) 

What if I substitute “licorice” for ableism? Would it be easier to talk about? 

Licorice: a set of beliefs that hold everyone must like licorice. All licorice eaters are equal but some are more equal than others. If you don’t favor Glycyrrhiza glabra you can’t sit at the table. The great big licorice table. 

Note: too much licorice will poison animals and humans. But that doesn’t mean there aren’t whole cities of licorice. 

Side note; when I was a boy in Finland, licorice candies were sold in bite sized pieces, wrapped in wax paper featuring a cartoon of a little black child. 

Licorice is not innocence. 

Ableism: a predominant belief that discrimination against the disabled is just a matter of innocence. E.g. “We really care about disabled people. What’s that? You can’t get basic accommodations? Oh dear. That MUST be awful! I’m sorry you feel that way!”

Ableism: the disabled have ungoverned feelings. That’s their problem. Really. It is their problem not ours. 

I call the example just above “the ableist shrug”—universities are especially good at this. 

Back to licorice: “So Billy, you don’t like licorice? Then you can’t be in our club house!”

Ableism is infantile. 

The shrug is privilege. It’s not convenient to think about those people today. Perhaps we will get to them tomorrow. 

I’m sorry you feel that way.

Candy can represent hegemony. Finnish candy. 

The shrug: we are good people. We care about you. But your accommodation is way down on our list of priorities, because, well, how do I say this? You’re not in our budget. Not in our plans, not convenient, yes, that’s it! You’re really really really not convenient. We love convenience here at Licorice University. We may talk big about being the best! Frankly, business as usual is just fine. We especially like the Licorice Clubhouse. 

Shrug:  the word comes from Late Middle English and it originally meant “to fidget”—and fidget is an early Modern English word meaning “uneasy”—the shrug, the licorice ableist shrug signifies that disability makes the ableist both uneasy and vexed. Having to think about disability is nettlesome. 

When the disabled bring up their problems—lack of access to buildings, bathrooms, educational materials, transportation, zero dignity in the village square, the shrug works this way: 

  • We personalize the problem. 
  • It’s the disabled person’s difficulty not ours.
  • All disabled people are just failed medical patients. 
  • If you can’t be cured, you’re a failure as a human being.
  • While the disabled are talking, we look at our iPhones.
  • We all know there’s something wrong with the disabled, it’s below the surface, like icebergs.
  • You can’t see it, but below the waterline they’ve got bad attitudes. 
  • If the disabled just had better attitudes. 
  • When the disabled say, “we really hate it here” you say: “I’m sorry you feel that way.”
  • Which means the problems are not about accessibility and inclusion but all about the individualized disabled person.

If you were the right kind of disabled, (Tiny Tim for example) you’d be grateful for the little we’ve given you. “I know it’s a dinky crutch, hand made by your impoverished father, but it’s yours Tiny. It’s yours!”

 

 

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 

Ableism in the Academy, Thoughts on Moliere

Ableism, the experience of it, requires the French adjective écœurante —for disability discrimination is simultaneously heartless and sickening. I recall the professor of English at the University of Iowa who told me my blindness would preclude me from being in his “famous” graduate class on Charles Olson. Another professor snickered when I said I was reading books on tape. When I protested the chairman of the English department said I was a whiner and complainer. I wept alone in the Men’s room. My path forward to a Ph.D. in English at the University of Iowa was stymied. This was a full six years before the ADA was signed into law. Who was I to imagine a place at the agora’s marble stump?

I had an MFA degree from the creative writing program at that same university and I just went ahead and wrote books and sometimes appeared on radio and television and I wrote for big magazines and over time I received tenure at The Ohio State University. Later I went back to teach at Iowa despite my earlier experience and these days I’m at Syracuse. I’m a survivor of sorts. I’m a blind professor. The odds were never in my favor. Somewhere along the way I began thinking of Moliere in my private moments and I laughed because after all, every human occasion is comical and Moliere recognized the comedic types one encounters in closed societies better than anyone before or since.

It doesn’t really matter what institution of higher education you’re at, if you’re disabled you’ll meet the following Moliere-esque figures. The heartless and sickening ye will always have with ye if you trek onto a college campus. You’re more likely to spot them first if you hail from a historically marginalized background however, the ecoeurantists are more prone to blab at you if you’re disabled, especially behind closed doors. Ableists love closed doors. All bigots love closed doors.

The “Tartuffe” is an administrator, usually a dean or provost who will tell you with affected gestures that he, she, they, what have you, cares a great deal about disability and then, despite the fact a disabled person has outlined a genuine problem, never helps out.

The “Harpagon” is also an administrator, but he, she, they, can also be a faculty member. The Harpagon is driven by rhetorics of cheapness. It will cost too much to retrofit this bathroom, classroom, syllabus, website, etc. If the Harpagon is a professor he, she, they, generally drives a nice car.

Statue du Commandeur: a rigid, punctilious, puritanical college president—“this is the way we’ve always done it. If we changed things for you, we’d have to change things for everybody. Yes, it certainly must be hard…” See:

The Geronte: when his son is kidnapped he says: “Que diable allait-il faire dans cette galère?” (What in the deuce did he want to go on that galley for?” In other words, he brought this upon himself. “Really, shouldn’t you try something easier? I could have told you.”

These are the principle types of ableists. I invite you to add your own.

The one thing they have in common besides a privileged and thoroughly unexamined attachment to the idea that education is a race requiring stamina and deprivation, is that they all genuinely believe accommodations are a kind of vanity.