On Being Expensive, Difficult, and Lonesome in Higher Education

I feel like opening up. Some days, owing to blindness, because of my internalized “super crip” expectations (all that rococo internalized ableism) I think my job is to make being a disabled professor look easy. Alright, most days. OK. Every day. Yes daily I saddle myself with the false and unachievable supposition I’m supposed to be absolutely flawless. After all, to admit a flaw would be to succumb to vision loss. The medical model of disability IS the academy as it’s currently established. Of course I know too much to live this way. Sure. Absolutely. But the academy doesn’t care what I know. Universities have almost no interest in unpacking their nascent ableism since this would require examining a thousand years of questionable institutional exceptionalism. Alright, maybe eight hundred years. The academy is constructed entirely around the idea of the elect, the promotable, the meritocracy, the lithe and nimble of mind and body. As a professor I too must be this way. If I have merit it must mean this business of researching, writing, teaching, and serving is natural. If it comes with hard work it’s only the difficulty of ideas, the speed of a required curriculum that stands in your way, not your body or your learning style. If these are impediments you shouldn’t be within a hundred yards of the ivory tower.

I’ve been a tenured professor (lucky me) at three American universities and I was a long time adjunct at a fourth. My blindness has been a problem at all of these places—sometimes an ugliness—and now I must admit at the age of sixty four and still likely a decade away from retirement that the career—mine—has been painful, clotted, steep, and wearisome. In the faculty ranks the disabled are not naturally linked with other academic diversity initiatives. While my historically marginalized colleagues have many many problems (which I do not dismiss) they also have (at least at the institutions where I’ve worked) something like society, something like a collective voice. I am the only blind professor at Syracuse University and have been the only blind professor wherever I’ve worked. My embodiment and my accessibility needs are lonely and exhausting things.

I remember the famous poetry professor at the University of Iowa who told me when I was a graduate student that I shouldn’t be in his class. In his view, if I couldn’t read as fast as other students I was uneducable. All disabled students who read differently or communicate differently know this story. Certainly autists who type or students with learning disabilities know their very presence in college is secretly or overtly questioned by faculty and administrators. Academic ableism is the norm. It’s been the norm throughout my forty plus year career as a student, grad student, and faculty member. Wherever I’ve worked or studied I try for consistency: calling out accessibility problems and ableist attitudes. Behind this though is the pressure to appear perfect and make the “life” look easy.

Nothing could be more unachievable or hopeless. I have faculty colleagues (some of whom teach disability related courses) who don’t care a whit about the inaccessibility of websites, academic research materials, PDF documents, HR surveys, adopted computer programs, online teaching and learning portals, PowerPoint presentations at department meetings or campus events, films or video presentations—the list is long when you’re blind. I’m the outlier asking for admission to all these things and after years in higher ed I feel no closer to inclusion or admittance today than I did years ago.

The only good thing is that computers have gotten better. Tablets and phones have become more blind friendly. Apple has made my life better. Microsoft is getting on board. The technology now exists to assure colleges and universities are fully accessible to the blind. But they’re not. The ableism of bureaucracy and meritocracy holds back the blind over and over again.

Meantime I’m supposed to be (as I said above) absolutely flawless. Despite the lack of good usable assistive technologies across campus I should be a superior teacher, graceful, kind, cheer up the normal people who find disability either consternating or distressing, publish as much as my colleagues, if not more, and be a “thought leader” whatever that means.

Not long ago during the same week when I was faced for the umpteenth time with a new university web portal that was inaccessible, I was asked to participate in a campus inclusion workshop. I declined. I said I couldn’t do any more emotional lifting for the university. This was a breakthrough for me.

“What’s that?” you say, “you can’t help the able bodied faculty anymore?”

That’s right.

I’m not going to pretend at easiness anymore.

My weekdays are clogged with inaccessible features.

The built environment is consistent. I don’t belong.

I’ve spoken about these things over and over for years and my spirit is patched. It has holes. The moths of ableism have eaten my beret.

In recent weeks I’ve called on Syracuse University to make films and videos accessible to the blind.

Some people have responded positively to this. Others not so much. One faculty member went out of her way to tell me how difficult and expensive this is.

Blindness is always “difficult and expensive” whether the subject is audible traffic signals, a Braille menu, or getting screen reading software for a PC.

I’m difficult and expensive and noisy and bothersome and mostly lonely in higher education.

Shame on Domino’s Pizza

Unless you’re blind or a friend of someone who is you probably haven’t been following the story about Domino’s Pizza’s Supreme Court case. Briefly, Domino’s is fighting the rulings in federal courts that affirm accessibility of websites for the disabled is required by law.

Domino’s has been sued by a blind man because the corporate giant’s website is inaccessible to screen reading software for the blind.

Retro-fitting a website isn’t expensive and in fact Domino’s is spending far more money contesting accessibility before the Supreme Court than any reasonable group of men and women would chose to. Why?

This simple and clearest answer has to do with umbrage that the ADA exists at all.
The prevailing view from this sector holds that all accessibility lawsuits are frivolous.
Domino’s wants to be the corporate slayer of the ADA.

Because the Americans with Disabilities Act was adopted before the web became a global and commercial reality it says nothing about cyber-space.

But federal rulings about inaccessible websites—commercial, academic, governmental, what have you, is that they are an extension of public space and are therefore required to be accessible.

Domino’s opposition to a simple accessibility fix for a blind customer—perhaps millions of blind customers, is cynical, corrupt, and ultimately about contempt for the ADA and the disabled. Behind Domino’s stands the Chamber of Commerce which has been overtly hostile to the ADA from the beginning. See this article by Robert Barnes at the Washington Post for a good overview. You don’t have to accept my word on this.

This is a very critical moment for disabled customers, students, and yes, citizens. If the Supreme Court rules in favor of Domino’s they’ll have created a new “separate but equal” code for the digital age.

What really kills me is that the disabled and their families have plenty of disposable income. Why wouldn’t the Chamber of Commerce want their money?

I guess they already have plenty of dough to go around.

Sasquatch, Blindness, and Good Old Carl Jung

In Eric Wiener’s review of John Zada’s new book “In the Valleys of the Noble Beyond: In Search of the Sasquatch” we learn that “you see a Sasquatch only if you’re undergoing a personal crisis.”

Alright. I admit it. Though I’m visually impaired, I’m seeing Sasquatches everywhere. This is Trump’s America after all and its one hot ugly mess.

Yesterday in the elevator of a suburban Washington, DC Hilton I saw a tiny Sasquatch with a head like a hairy anvil. He was having trouble pushing the buttons so I helped him. He was checking in to the executive suite.


Now it’s true that when people are distressed they see things. The blind are no different. I once saw a Russian businessman eat an entire bear in a Helsinki restaurant. He pocketed the claws.


Lacrimae rerum—or Disability 101

Always the doctor leaning close, saying you’re different. You raise your hands. The doctor is shabby. He’s asymmetrical like a Roman Emperor. There’s something wrong with the doctor. And even though you’re the monster—hence, proprioceptive, fast and clear, you know you’ll never get the doc to admit his shortcomings.


Maybe Sasquatch are defrocked doctors roaming the hinterlands. Plastic surgeons who ruined boobs and noses.


When I was eleven years old I fell onto a pricker bush. It’s hard to say how I did it, but I was impaled on hundreds of thorns. My sister who was six at the time, and my cousin Jim who was maybe nine, fell to the ground laughing as if they might die. I begged them for help which of course only made them laugh all the harder. I remember tears welling in my eyes and their insensible joy. I also knew in that moment they were right to laugh—that I was the older kid, was a bit bossy, disability be damned. I was the one who told my sister and cousin what to do. Now I was getting mine. My just desserts. In the end I tore myself from the monster shrub and stormed into the house. I sulked while they continued laughing outside.

Now sulking is an interesting thing. The word comes from the mid 18th century, from the obsolete word “sulke” which means “hard to dispose of” and is of unknown origin. In general I love words that have unknown origins.

The verb “to sulk” means “to be silent, morose, and bad-tempered out of annoyance or disappointment.” The most famous instance of sulking in literature is in opening of The Iliad where we see Achilles sulking in his tent, refusing to fight with the rest of the Greeks. In America where there’s a lot of sulking, perhaps the most famous sulker of all was Richard Nixon, who said in a press conference after losing the gubernatorial election in California that “you won’t have Nixon to kick around any more.” If you’re a sulker you can’t deliver the Gettysburg Address.

In this way, successful sulkers know the cave of hard dispositions must be visited but only for the briefest of repairs—like a toilet on a moving train.

At eleven I pulled those damned prickers out of my arms and legs, my neck. I asked for no help.
And as a disabled kid this was always the way of things. I remember the day a substitute teacher (who must have been all of 20) made fun of my blind eyes in an eighth grade math class. “Who are you looking at?” she said, with what today they call “snark”—and my “Lord of the Flies” classmates burst into laughter. I got up and fled the room.

I sulked. All alone. I knew a good place in that school. In the bomb shelter. I wept among empty aluminum water cans with radiation logos stenciled on them.

After that I reported the teacher. Sulking has power if you know when to quit. Achilles knew.


I suspect Sasquatch are sulkers. Or better: they’re the archetypes of sulking. I’m going with Carl Jung on this.

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:
Barnes and Noble

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 

Adult on Campus

When I was a child I spake as a child but then I got my act together. If the time ever does come when I stand before my maker and speak about my life I hope to say I became a man. I do not mean the craven, self-absorbed, meretricious boy-man of my era as they’re merely children in big boy clothing. By my lights a man acknowledges his neighbors and fosters what used to be called civic standards. Call me a boy scout if you wish. But kindness, loyalty to virtues, the courage to tell the truth—even about the self—trustworthiness—and yes I know its hard to take anyone seriously who evokes the boy scouts but let’s think of them as having been liberated by their rhetoric if not by their leadership.

In this way I stand before you. I’m a 64 year old blind guy who’s spent the last thirty years fighting for what we call “inclusion” nowadays though I prefer the term civil rights. Inclusion is so clean. Civil rights are tougher to promote as they require knowledge of the law, ambition for those who’ve been marginalized, and a willingness to insist on equal treatment for all. Inclusion seems tidy—seems to suggest that equality has already been achieved and all you need is a ticket to get into the pleasant, inclusive big top. Where civil rights are concerned its best to consider the ways that human systems resist moral scales whenever it’s convenient.

The man or woman or child who insists on civil rights is inconvenient. (S)he’s likely outspoken when the moment calls for garden party politeness. Meanwhile, as Michael Eric Dyson has said: “Justice is what love sounds like when it speaks in public.” The speaking can be uncomfortable to hear. Invoking an approximate analogy or metaphor, speaking truth about civil rights must necessarily be irate love. Inclusion, for me, doesn’t cut it.

Inclusion is a fine term but its subordinate to a larger expectation that civil rights, equal rights have been achieved. I’m a university professor. See me in your mind’s eye, walking across the campus with my guide dog. I struggled all morning to get an accessible version of an academic article; I argued with a dean about the needs of a learning-disabled student whose accommodations didn’t happen in a timely way; I learned that a major renovation to an audito­rium won’t be accessible to wheelchair users—these things within a single morning. Now multiply this five-hour period by 365 days per year, minus college vacations—make it 276—then again, multiply by years. Do not think me rebarbative or an agitator. I am not a bellyacher. In this instance I’m walking the agora, head up, fleet of foot, holding ambitions for every disabled learner who stands at the portcullis.

In this way I’m an adult.

Disability in the Future Perfect Tense


It’s axiomatic that disability—personal or collective—is generally represented as a pure disadvantage. The word itself comes to us from the Industrial Revolution when disablement signified workers injured on the job. The term is outworn, inexact, and now itself an obstacle to people with physical differences like a bad curb cut.

The future perfect is the verb tense that expresses the idea that something will occur before another action in the future. It can also show that something will happen before a specific time in the future. Example:

By next October the Boston Red Sox will have achieved first place.

As a blind person I’ve lived my life via the future perfect. At 18 I remember saying: “By the time I’m thirty I will be a writer.” The future perfect is critical for ambition. I can and will do this.

The thread-worn term “disability” has no future perfect about it which is why disability activists have taken up the ancient word “cripple” to designate, ironically, that they’re not without capacity. A cripple can work, the disabled cannot. Parse this however you like, the issue for the disabled is how the future will stand as distinct from the past. The future perfect.

The future perfect must be concerned with diversity and center disablement as central to human experience and not as an outlier position. Strictly speaking disability is the inability to perform a major life function—standing, walking, hearing, seeing, processing information, speaking—disablement is broad. Disablement is also part and parcel of every ethnicity and community. It’s at the center of diversity.

When I worked at one of the nation’s premier guide dog schools it became apparent to me that none of the dog trainers spoke Spanish. I pushed for this but was unable to convince my superiors that multi-lingual service and outreach mattered. There are blind folks who do not know that guide dogs are available and are without cost. Blindness is also at the center of diversity.

So the future perfect where disability is concerned is about inclusion but its also about something much more generous than that term may customarily signify: it’s about us. By next October the disabled will have achieved their just place at the table.


The future perfect means understanding our ways beyond the scylla and charybdis of the medical model of disability vs. the social modal. The former suggests that an incurable patient is a defeat for the physician and hence he or she becomes a problem—a living embarrassment for the medical establishment. When I spoke to a graduating class of young ophthalmologists some years ago I said the number one worst thing you can say to a patient is: “I’m sorry, there’s nothing more I can do for you.” What can an eye doctor do for a blind person? Plenty. Why? Because of the future perfect. Even as I type advanced work is happening around the globe in the fight against genetic forms of blindness. What seems incurable now will be curable tomorrow, but not for the patient who disappears and never seeks medical help again because her doctor said good riddance.

I do not argue that the blind need to be cured to be citizens. Which leads us to the social model of disability. The disabled, as evidenced by the word itself are accorded a pejorative or second class status in society. This is a 19th century idea based on the principle that the built environment (the factory world) cannot accommodate a woman without hands. (For example.)
The term reasonable accommodation means, among other things, that redesigning our work environments makes good sense. In the future perfect almost every disabled person is employable. There are a hundred reasons why this matters but let’s put an accommodating work place in a broader context: when facilities are good for the disabled they’re actually better for everyone. This is indisputable. Who, when pushing a stroller, has not been grateful for a wheelchair ramp and an alternative to a revolving door?


Folks who talk about diversity often don’t think of disability as part of the matter. They think of it in purely ethnic or gendered terms. This is understandable because there’s a lot of discrimination that’s still in force and which has not been sufficiently addressed. But the disabled are part of every socially and historically marginalized group. The future perfect says that a blind person of color should have a first rate educational experience no matter where she lives and that her schoolroom should be fully inclusive from the get go.

In the future perfect disability will be understood as cross cultural competency and not as an outlier position.

In his fabulous book “Strategic Diversity Leadership” Damon Williams notes that diversity is protean, that its language changes quickly and that the best university leaders must understand that the movement of identity language has everything to do with the awakening needs of diverse communities. He writes:

“Different people use different words or names to signify membership in a particular cultural group or to define diversity on a broader level. Because these terms can be culturally specific, diversity leaders should not assume they know them. Asking members of the group their preferred term is an essential first step.”

Excerpt From: Damon A. Williams. “Strategic Diversity Leadership.” Apple Books. https://books.apple.com/us/book/strategic-diversity-leadership/id1032365916

The preferred term is about the future perfect. We will not be who we were when other people named us.

Williams adds:

“Strategic diversity leaders must be ready to work with individuals and among communities where once-stable terms and categories are undergoing considerable scrutiny. What matters is that these leaders work to address the profound and continuing challenges that lie beneath these terms, including equality, inclusion, and fairness.”

Excerpt From: Damon A. Williams. “Strategic Diversity Leadership.” Apple Books. https://books.apple.com/us/book/strategic-diversity-leadership/id1032365916


In her now canonical essay “On Being a Cripple” the late poet and memoirist Nancy Mairs (who had M.S.) wrote:

“First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People–crippled or not–wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.”

In the future perfect the disabled are central to every community and yes, they get to swagger.

Swagger is likely one of the many words first used by Shakespeare. It appears in English for the first time in “A Midsummer Night’s Dream” and its probably a take off on the word swag witch originally mean to sway ostentatiously. As Shakespeare uses it it means to strut in an insolent or defiant manner.

Why would swaggering matter to a cripple?

Because it’s fun. In an inclusive world everyone gets to show off.


Diversity within group identity is the future perfect. The black hip hop artist Leroy Moore who started a group called Krip Hop Nation puts it this way:

“Just like hip-hop is global, hip-hop artists with disabilities are global with common experiences of discrimination inside and outside of the hip-hop arena. These opportunities and my activism during the 1980s propelled my advocacy on activism, disability, police brutality in the US and across the globe.”

In the future perfect disablement is intersectional with all aspects of multiculturalism.

But there’s much more to think about.

Dancing for instance.

Everyone recalls Emma Goldman’s famous quote: “If I can’t dance I don’t want to be part of your revolution.”

Right now disability art is entering, has entered the mainstream. We’re beginning to see television and films from Hollywood make the first turn toward using disabled actors where possible. In the future perfect this will be customary.

We’re seeing more articles and essays about disability by disabled writers in publications like the New York Times.

In the future perfect disability won’t require its own section of the newspaper because it will be part of every diverse groups experience.

In the future perfect Leroy Moore has his own show on TV.


A decade ago, more or less, I was sitting in a room with world class physicians and geneticists who were talking about the genes that cause congenital blindness. They were already finding ways to modify those genes as part of a future perfect plan—to restore sight in children born blind.

During the meeting one of the doctors pulled out of his pocket a brand-new device: the IPhone.

I’d no idea at that moment the iPhone and Apple Corporation would change my life profoundly.
They had the future perfect.

Today’s iPhone allows me to read anything instantly.

When I was a grad student thirty years ago the electronic scanning and reading machine in the university’s library was the size of a Maytag washing machine.

Not only will the iPhone read anything, it will take photos and then describe what’s in them.

The future perfect of disability is swagger, confidence, attainment, ease of accommodation, and respect in the public square.

The future perfect of disability will break down the biological and experiential aspects of identity formation.

The future perfect of disability will be a pure, swaggering agency.

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:
Barnes and Noble

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 

Emmanuel Kant and the Barometer

In the early summer of 1798 Emmanuel Kant decided to publish his lecture notes on metaphysics so that future scholars might use them. The Enlightenment was not without transparency—a matter easily forgotten in late post-modernity. It’s also often forgotten that Kant’s primary research topic was human nature.

For Kant, “virtue” was the point at which morality makes contact with human nature. Lately I’ve been (in my mind’s eye) viewing (daily) the Kantometer—like the barometer it measures pressures unseeable. Its point of departure is virtue as recognized above. There are other indices of course. They’re tiny gradients etched at the margins.

Morality meets the Aristotelian idea of the good, virtue index 12. A good score. Now a certain greasy American senator announces black people should go back where they came from and the Kantometer, measuring the virtue contact drops like the barometer in the Caine Mutiny.

Kant believed virtue and the pursuit of moral life are the duty of humankind.

The Kantometer is busy and mostly sinking.


I have tried to be a good man, though I fail, much as anyone must. The clouds come close, deer nest under the apple trees. I fancy vengeance as I want so much to consign all the meretricious bureaucrats to Hell. I ask Jesus to forgive me my lambent distress. I want to be good. I wish the love my animals show me to be merited. I want to be the kind of poet who builds houses for people.


I agree with Jurgen Habermas: “each murder is one too many.” I wander around grieving. There is so much death and its industries are fed by good and bad citizens alike. This is why terrorists hate the nation states. Try and locate the moral centers of the United States or France. Refugees stream across uncivil borders desperate for food and medicine and they’re met with realpolitik. Neither Vladimir Putin or Trump wants to save the children of this thirty years war. As I write, the half starved deer are nosing among the daffodils in my yard. I see them as children.


How to be good? “Hell isn’t other people. Hell is yourself” (Ludwig Wittgenstein) I think, “even Jesus went to Hell, and he came back, stronger.” We’re here to endeavor for strength. Such proud words. I fail and often. Old Ludwig Wittgenstein often sounded like my Finnish grandmother: “we’re not put here to have a good time.”

I’m the electrolysis of good—you too. That’s how we’re wired. God grant me more volts.

Calling All Enfant Sauvages

Everyone knows what the “enfant terrible” is and to the extent one values resistance to conformity may have a private E.T. Hall of Fame. I’ve had one since junior high school. There are no photos or news clips scotch taped to my walls. It’s all in my head. So who’s in there?

Samuel Beckett; Rosa Parks; Robert Nesta Marley; Sojourner Truth; Leon Trotsky; Carolyn Forche; Wislawa Symborska; John Lennon; Cesar Chavez; Pentti Saarikoski; Frederick Douglas; Richard Wright; Langston Hughes; Chance the Rapper; Voltaire; The Clash; Rodney Dangerfield; Groucho; Allen Ginsberg; all graffiti artists; Wanda Sykes—they were all young and pesky at one time or another—and yes its a long list and unending so long as I have consciousness….Desmond Tutu; Malala despite her saintliness; the young people of Hong Kong and Puerto Rico….

Now a group of enfant terribles is called “enfant sauvage” which means just what you think it means—a savage collection of children. The current putative president of the United States is just now launching his campaign for reelection and his strategy is to label the opposition party enfant sauvages which is to say, primitive, dark skinned, extremist, and dangerous. What’s worse than a socialist? A woman socialist wearing a scarf.

Trump is clever. He will bill his racializing slanders as simple ideology. That will be enough to get the older infants in his corner. We’re going to need a lot more young and angry voters and those formerly known as savages to come out and vote. This is obvious. What’s less clear is whether opposition candidates can sidestep the conditioned interview questions we’ve come to live under—no one questions the questions. The enfant terrible resists conformity. Trump pretended to be one. I think we need a genuine fighter from the left.

I’ll vote for a former savage child but only if she or he understands the plight of Americans who’ve not been helped by Trumpism. By this I mean “deeply” understands. Without such a viewpoint and without this fire the 2020 election will be a humiliating debacle.