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.

The Confessions of Arnold the Ableist

Chapter One

I gave a nickel to a cripple and then I walked away. “Nickel, cripple, nickel, cripple,” I thought. I gave nothing to the blind man I met in the next street. “Nothing, blind,” I thought, “these also go together.” Then I stepped in some dog shit. I knew it was disabled people who did this.

Chapter Two

I don’t mind if a cripple sits next to me on the bus—I’m sitting in their reserved space after all and I’m “Normal” but I wouldn’t want my daughter to marry one. Their art is barbarous and you must admit, they smell.

Chapter Three

O rodomontade! It’s a crippley-wippley world! Look! Here comes one with some kind of breathing apparatus! I’d like to rip it right our of her mouth and take that smug look off her face! They all think they’re so “special!” Alright, yes, I admit, as a boy I used to hurt animals, but never the big ones.

Chapter Four

You wouldn’t know it, but I’m a university professor. I mean, what with my habits of dress you wouldn’t recognize me. I wear tight jeans and radical tee shirts. But it bugs the shit out of me when the namby pamby LD students and those sightless ones enroll in my classes. I get up on my fictive high horse (named “Trigger” of course) and ride wildly around the campus big top snarling at deans and admissions flunkies. I can’t decide whether the disabled or the deans are more pitiable!

Chapter Five

O dear. I broke my coccyx at a garden party when I attempted to sit on a folding chair and it collapsed beneath me. You can’t imagine the pain I’m in. I’ll tell you all about it for another gin fizz.

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 

Lyric, Crippled Anger

Two nights ago I over drinks and dinner with poets and writers at the University of Cincinnati I let my disability freak flag fly. Sometimes (though I aim to be circumspect and polite, especially with new found friends) I feel the distress of disablement–the peninsula effect of the matter—my people are the last people to be surveyed, especially in academic circles. While some American universities have disability studies programs or courses the majority of colleges do not. Moreover, while diversity gets discussed in neoliberal circles within higher education these discussions usually leave the disabled out. I admitted the following things to the poet Rebecca Lindenberg one of my hosts:

I’m 63 years old and still fighting for disability inclusion everywhere. The fight often seems to be going badly, or backward.

As I age I feel the pull of the soul—really, those roads of the guitar as Lorca might say. I don’t want to die angry. While I don’t expect to vanish tomorrow, I could. I cross the streets with a guide dog. I navigate on faith. The unseen is very present in my daly thoughts.

I’m tired of the academic creative writing industry with its conferences that are often hostile to disabled participants. With academic literature programs that foreground the notion of intersectionality but still leave disability out of discussions of hegemony and oppression.

I told Rebecca how disheartened many of us are in the disability community (which is hardly monolithic) by the steep struggle we still face to be recognized by feminist scholars, LGBTQ scholars, African-American scholars, and so forth.

Such things aren’t on my mind as exercises. This summer at the famous MacDowell Colony for the Arts I heard a famous novelist tell a huge crowd that the MacDowell Colony would no longer be blind and poor when it comes to recognizing comic novels as an art form. He then repeated the phrase because he thought it was so apt. And there I was, sitting on a folding chair with my guide dog. Disability as metaphor is used by artists and progressives all the time. This hurts. No wonder the Association of Writers and Writing Programs conference remains indifferent and even rude to disabled writers. Everyone knows there’s something wrong with us beyond the obvious.

I talked about the war on disability that’s underway because of genetic research and the movement to eliminate disabled bodies which comes from both the scientific community—eugenics 2.0—and political persuasions—Iceland has eliminated people with Down syndrome for example. Hitler called the disabled “useless eaters” and we’re still imagined that way by the political state, even European states.

I rattled on and on, letting out my frustrations. I talked about academic creative writers who have disabilities and pretend they don’t and how much this disturbs me.
I know I was venting in good company for Rebecca Lindenberg has her own disability and struggles with it hourly.

And there’s the specter of Trumpism, being triggered, feeling a neurological highjacking going on all the time, a fight or flee distress because deviant bodies are under attack.

And so it occurred to me Rebecca snd I might start a very informal back and forth dialogue to which we can invite others here on this blog. What is just anger for writers? How do we build bridges? Or as the poet James Tate once said, “start a fire with our identification papers.?

—Stephen Kuusisto

Rebecca Lindenberg responds:

Thank you so much for sharing the note above with me. I think it captures the breadth of our conversation aptly, though I think it’s worth mentioning (in the spirit of candor) how emotionally charged such conversation can be, though I think of that as a positive thing. Sometimes I wonder how much of the American conversation would be different if we were all a little more willing to be uncomfortable for the sake of someone else, to push our own envelopes more. To wrestle with the difficult. Because for me, part of the defining characteristic of living with chronic disease and disability is learning to persist with difficulty, to muddle through what you cannot get “over” or around, to sit with uncomfortable realities, and also, learn to problem-solve them. Problems, I find, are easier to solve in collaboration than alone, pretty much every time. But you can’t solve a problem that one of your collaborative group does not acknowledge or understand. The bravery to be candid, and also the courage to hear what is candidly spoken, are two kinds of strength that the world requires of us if we’re to make it any better.
I’ve thought about this a great deal. I remember one evening, many years ago, after a sort of semi-official writerly function where my late partner Craig had been (it seemed to me at the time) somewhat bracingly frank with our hosts, I sort of wearily admonished him for acting like kind of a jerk. And I’ll never forget his response, because it was: “Do you want me to be Good, or do you want me to be Nice?” I remember my initial thought was, Why can’t you be both? But years on, I think more and more every day that it is too often difficult to be both. And while I very much want people to like me, as I think most socialized humans do, when push comes to shove, I’d rather be Good. By “good” in this context, I mean just. I mean compassionate and humane, but also unafraid to advocate for myself, for my trans daughter, for my students, and so forth. I also mean fair, and mindful of others, and cognizant of complexities, and insofar as I am able, conscious of my own positions of privilege and my own gaps of knowledge and understanding. As we were talking about together the other night, I do not think candor is opposed to kindness, and I do not think “politeness” is particularly healthy – in fact I think it’s a coercive and often insidious way of keeping people “in line” who might otherwise disrupt the status quo from which the mighty (pretty much singularly) benefit. And politeness insists that those in charge not be made uncomfortable. But if they (or in some cases, we) do not feel uncomfortable, how can they (or we) come to know that something is very, very wrong? And along those lines, I believe that anger is a very important emotion, and a healthy one. (I was joking about this on social media the other day, actually, a beloved friend of mine responded to one of my posts with “Anger is healthy,” and I replied in all caps, “THEN I AM FULL OF HEALTH,” which is especially ironic for me, and for the sources of my anger.) But it’s true – anger is a source of energy, of activity, and of agency. Anger empowers. But anger should never, ever be confused with abuse. Abuse does not empower, it silences, it paralyzes. And it is designed to silence and paralyze. And it can come from any of us, at any time. Anger is interested in getting things going the right way, abuse is only interested in getting its own way. And at almost any cost. But because anger – and I almost feel Blakean about its “infernal energy” – has so much to offer, we do sometimes have to put politeness away in its favor. Because the one thing politeness is designed to avoid, really, is anger. Here’s a joke to show you what I mean:
Two Southern Belles are sitting on a porch, rocking in their rocking chairs, fanning themselves with their fans. Southern Belle #1 turns to Southern Belle #2 and says (you have to imagine your best high-falutin’ Southern drawl here):

Do you see that horse out there? My daddy bought me that horse because he loves me so much.

Southern Belle #2 says: That’s nice.
Southern Belle #1 says: Do you see that grand house over yonder? My daddy bought
me that house because he loves me soooo very much.
Southern Belle #2 says: That’s nice.
Southern Belle #1 says: See that there shiny auto-mobile? My daddy bought me that auto-mobile because he loves me so much.
Southern Belle #2 says: That’s nice.
Southern Belle #1 says: What’s your daddy done for you lately?
Southern Belle #2 says: He sent me to a finishing school in Switzerland.
Southern Belle #1 says: What’s finishing school?

Southern Belle #2 sighs, folds her fan in her lap and says: It’s a boarding school for young ladies, where you learn such things as proper deportment, and elocution, and which spoon to serve with which kind of soup, and how – when you really, really want to say Go Fuck Yourself – you say, ‘That’s Nice’.

It’s funny, that joke, but it kind of gets at the point I’m trying to make, nonetheless. “Politeness” is – by its very design – repressive. And that joke is funny because, as they say, nobody died. But it’s not always so amusing.
Now, to clarify a little, I’m all in favor of being considerate of those around you, their feelings and experiences. I think it was Lucille Clifton who once said (not wrote, she just came out and said it), “Walk into any given room, and every single person in that room is going through something you could not even begin to comprehend.” And I think I try to walk into every room mindful of that truth – a truth I have found bears out again and again and again. But “politeness” as we have socially constructed it (a system of “do’s” and “don’ts” like “never talk about sex, politics, or religion,” a nearly-invisible way of propping up a social hierarchy that rewards conformity and punishes difference) isn’t really about being kind or compassionate to people, actually. It’s about asking people, often the most vulnerable people in any given setting, to suffer their own discomfort for the sake of the comfort of whomever in that setting is perceived to have the power or the authority. A man might make a move on a woman, which might make her uncomfortable. Rather than react appropriately (that is, angrily) she will very often downplay the situation, or try to laugh it off and smooth it over, or feel compelled to “let him down easy” so as to “not make a scene,” but that’s more about preserving his dignity than it is about protecting her own. (I should know, I’ve been there, and beaten myself up about it afterwards.) A person of color might find themselves on the receiving end of a rude, racist remark, and instead of calling out the person who made the remark, they might just ignore it, or change the subject, or find a way to gently excuse themselves from the situation. It might be because to correct someone requires more emotional labor than they wish to do at that moment, but one of the reasons it IS emotional labor in the first place is because they’re trying to respond within a code of conversation and behavior that requires certain niceties be observed and maintained, the offending party not be too embarassed, lest (among other things) they somehow retaliate. The implicit threat in coercive politeness is that the person in a position of privilege or power will escalate the situation, if the more vulnerable party does not tow the line. Therefore, being “polite” in a discomforting situation just reminds the individual striving not to “make a scene” or whatever that we don’t really feel safe. Our safety is as fragile as this pretense, which we are primarily called upon to maintain. And people with disabilities are frequently – no, constantly – coerced by this unspoken, culturally-ubiquitous code of “politeness” and asked to hide, downplay, apologize for, or try to compensate for our disabilities. I’m diabetic and I have some of the unfortunate visual complications of my disease (in part because for so long I had no access to meaningful health care, but that’s a whole other story). I have been diabetic for 30 years, or three-quarters of my life, and I can’t tell you the number of times I’ve sneaked off into bathrooms to test my blood sugar secretly in the stall rather than at a table in a restaurant where I might make someone uncomfortable, or the number of times I’ve apologized for having to interrrupt a conversation or shared experience with someone in order to treat a low blood sugar (a situation which, untreated, can be fatal). At some point I caught myself out. Why, I wondered, am I apologizing to this person for trying to keep myself alive? When for a time I couldn’t drive because of hemorrhaging in my eyes, I found myself being excessively obsequious to my Uber drivers, conscious as I was that without them my mobility around a city with really crappy public transportation was very, very limited. So even when I found myself appalled by an assertion about American politics, or a story about a drunk female passenger, or rudeness offered to me personally, I was meek, ameliorating, polite. And it hurt more than I cared to admit to myself, as I became increasingly aware that I was pandering to people I knew were in the wrong, because I also knew that in that situation, I was somewhat frighteningly dependent upon them. Because I felt vulnerable, I tacitly agreed to stroke the egos and protect the dignities of the people who were making me feel my own vulnerability even more. A wound, the salt.
But beyond that, my real beef with coercive politeness is that it inhibits open, honest conversation. Like this one! Like the ones we got a chance to share in Cincinnati. Open, honest conversation can be bracing – for everyone. But I think of that feeling I get from such a conversation – which is a little like being together in a tiny boat at sea – seems to me to represent the feeling of going-through-something with someone else, its own kind of solidarity. It is for me, too, the feeling of growing as a person and a thinker, of pushing my own envelope a little, placing myself in a scenario that would feel, if not for the good intentions of my interlocutor, precarious. It’s work, for sure. But I’d rather do that work than the work of self-censoring, beating myself up, coping endlessly with feelings of awkwardness and discomfort – my own, or yours.
I would be so interested in hearing your further thoughts on these things, and I would be so, so very interested in hearing the thoughts of others, which I expect might be very different from my own, and I would welcome that. It’s my experience that I have had plenty of occasions in my life to think about the things that make my life very, very hard to live sometimes. I know that someone whose life is made hard to live by a different set of circumstances would almost certainly have a different take on things – perhaps expanding upon this conversation, or problematizing some of what I’ve offered. For me, my obsession with literature stems in no small part from my infinite fascination in hearing from others about experiences and points of view that differ from (and also re-contextualize for me) my own.
I wonder who else we could invite to join our conversation? Should we just reach out an invite people? Run it up the flagpole, as it were?
I look forward to our continued correspondence. And I totally forgot to have you sign your book for me so: Next time?

Very warmly,
Rebecca

**

Dear readers, especially poets and writers (though you needn’t hail from this territory alone) please feel welcome to chime in.

You can send me your thoughts and I will post them.

Stephen Kuusisto

stevekuusisto@gmail.com

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.

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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