Cranky

I must admit I’m a cranky man. This means I’m a hurdy gurdy man, a street nuisance. Did you know most curbside organ players were disabled? Many were war veterans. Jobless. They played for your amusement. Several cities in America didn’t like them. “Ugly Laws” were adopted across the nation at the turn of the last century—edicts stipulating bothersome, unsightly people were forbidden to appear in public. This was excellent news for the asylum business. The United States loves to lock people up for any reason at all—you’re black and deaf. Asylum. You’re blind. Asylum. You’re an immigrant in Trump’s America. Instant prison camp. Native American. Home detention. Gay? The Asylum. The Los Angeles County Jail is the largest psychiatric facility in the U.S. Cranky? You bet. I’m so cranky I can’t muster irony.

Disabled I know a good deal about cruel irony—“the act of using somebody’s words against them, usually when something to their great detriment is about to be inflicted upon them.”

I’ll never forget an administrator of a certain college who, once he had me behind a closed door told me I wasn’t a competitive blind person, why he had a roommate at university who was a blind Olympic rower and so forth. He was essentially firing me because I’d asked for a reasonable accommodation.

But you see here’s the trap. I’m cranky if I talk back, assert my dignity and my rights. I am especially cranky at the University where when I ask for basic ADA 101 accommodations, (a sighted graduate assistant to help me in my daily work) accessible texts, descriptions of overhead projections, asking that our websites and teaching software be accessible and so forth) I’m labeled as a real cranky pants. Academic ableism is built on cruel irony. “If you were more like us you wouldn’t have a problem. You don’t like what’s happening to you? You must be the problem. Not us. Not us able bodied birdies….”

I’ve met so many able bodied birdies. They may have different kinds of feathers but their song is always the same.

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 told 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?

Now 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 that accommodations are a kind of vanity.

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 

Alone in Boston, Guide Dog Notwithstanding

I’m alone with my guide dog Caitlyn in the back bay of Boston. Tonight we’ll take in a ball game at Fenway Park, home of the Red Sox. Dog and man going solo to a stadium. Sometimes in this blind life I worry in advance: how will it go? Will everything be OK? Will I find my seat? Will I find my way back to my seat after searching for a hot dog? Will strangers be helpful? Will I experience kindness? Then in occurs to me, these questions are ordinary—everyone has them, blindness or not. Will this day receive me? How will it go?

There’s a song by the late great Lou Reed that I like which has the refrain “it takes a bus load of faith to get by…” I’ve always liked Lou’s employment of “faith” which he offers with a hint of irony to be sure. A bus load of faith is a crowd’s worth of faith—we will get where we need to go without mishap. And we’ll manage it because we all had the proper thoughts. We kept that bus on the road with our individual and collective magic. Faith is hard work.

I think this is why I like to just take off and go places by myself. Or with just my dog for company, I feel the skin of my faith grow tighter. I step out into the unfamiliar. I’m alert to the mysteries of being alive and the sheer improbability of having a consciousness. I walk down Boyleston Street and feel how provisionally alive I am and how lucky. And I don’t know precisely where I’m going.

I’ve been teaching this week at a wonderful low residency creative writing MFA program called “Solstice” located at Pine Manor College in Chestnut Hills. As a nonfiction writer I’m often talking about the essay—how creative prose can help us shape experience, make sense of the blooming buzz as they say. One may think of the essay as a soothing corral for the mind. Here is a shape in language within which we can rest, survey, feel a bit less panicked by the wideness of perception. Sometimes a horse, upon entering the corral is instantly calm.

And then there’s the horse who gallops into the shadows and sun beams with no idea where she or he is going.

I think that’s me just now. Enter the day. Get a little lost. Feel again the ache of amazement, that transverse cross of body and mind.

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 

Structural Inequality at Syracuse Can Change….

Things are going badly at my university where diversity is concerned. In fact this is an understatement. The racist, ableist, homophobic, misogynistic videos from a fraternity party are chilling. Syracuse U didn’t make these videos happen; didn’t instruct fraternity boys to unleash hatred. I give the university a pass on coercion. Yet our civic space, or “agora” has long been exclusionary, toxic, and even cruel to historically marginalized students, staff, and faculty. 

Right now there’s a lot of talk about systematic change. Committees are being called. Grievance meetings are being held. They are good first steps. 

Syracuse University cannot succeed unless her administrators, staff, students and faculty have a collective and shared intellectual experience that examines bigotry in all its institutional and hegemonic ways. 

Disabled as I am, I have seen first hand how senior administrators have shrugged their shoulders when told that accommodations and access for disabled students, staff, visitors, and faculty are not easy to obtain and are often lacking altogether. 

This isn’t a new experience for me. I’ve been teaching here for 7 years and have been ignored for much of that time. Course management software not accessible? Thanks for telling us Prof. K. Ho Hum. You know of a student who failed a course because she didn’t get note taking accommodations in a timely way? Thanks for telling us Prof. K. Ho Hum. What? You can’t get access to teaching materials in accessible formats? Thanks again. Ho Ho Hum. 

7 years is a long long time to be waiting for action. Now, because of the horrid videos mentioned above the university is talking about changing its culture. 

My argument, such as it is, is that ableism is rife in the academy. Most scholars believe that education is a race and it goes to the fittest. They believe disabled people are only on campus because of the sufferance imposed by disability rights laws. How many students have come to me over the last few years sharing tales of faculty who don’t want to provide them with reasonable accommodations—extra time on tests, the ability to record lectures because they’re blind, sneering at them because owing to autism they wear noise reduction headphones in class—the list of faculty misdeeds is a long one. Then there are the senior administrators, deans, provosts, associate vice presidents, who think disability accommodations are best left to a later day. Who say to themselves, “We’ll get to that next year.” Who believe disabled students and faculty are malcontents. I know because I’ve been labeled as such. 

Ableism is built into the very buttresses of higher education. Higher Ed is a seat of privilege, merit, exceptionalism; it’s a race that goes to the swift; maybe the good looking; if you need any kind off academic help you shouldn’t be here. Unless you’re a star athlete of course. Ho Hum. I mention the athletic support system not to denigrate it, but to point out that the cost of helping disabled students isn’t the real issue—ableism assures us that the appearance of helping the disabled presents the image of a college or university with undeserving students. 

I’m not wrong about this. In his new book Academic Ableism: Disability and Higher Education Jay Dolmage writes: “basically, academia exhibits and perpetuates a form of structural ableism.”Then he adds, and I think this is key: 

“I borrow to a certain degree from the notion of structural racism, defined by the Aspen Institute as follows:

A system in which public policies, institutional practices, cultural representations, and other norms work in various, often reinforcing ways to perpetuate racial group inequity. It identifies dimensions of our history and culture that have allowed privileges associated with “whiteness” and disadvantages associated with “color” to endure and adapt over time. Structural racism is not something that a few people or institutions choose to practice. Instead it has been a feature of the social, economic and political systems in which we all exist. (n.p.)

Likewise, ableism has to be seen as a series of entrenched structures—not just the action of an individual or of individuals. We have to understand that because of these pervasive structures, we live in a society that resists efforts to ameliorate or get rid of ableism. As scholar and activist Daniel Freeman writes, “Able-bodied people all have things that they fall short with, skills or tasks that they will never master. But when disabled folks say, ‘These are the things I need in order to do my very best,’ it is labeled as an ‘accommodation.’ . . . The language itself is ableist in nature, bringing into focus the reality of how disabled bodies are seen as barriers to able-bodied life” (n.p.). Accommodation is thought of as something that always needs to be created, something that has a cost. ”

Excerpt From: Jay Dolmage. “Academic Ableism: Disability and Higher Education.” iBooks. 

Until the administration at Syracuse understands the structural dynamics of intersectional and pervasive delimitation the problems experienced by people who hail form historically marginalized backgrounds will persist. Let us point out that disabled students and all other minority students are paying for the opportunity to get an education. Or as one disabled student said to me yesterday, “paying for the opportunity to be treated badly.”

Moreover Syracuse can’t get better so long as its public rhetoric about disability is steeped in the lingo of 1970. Take the following passage from the School of Education’s web site on accessibility: 

Syracuse University and the School of Education are dedicated in their mission to fully include persons with disabilities and special needs. In compliance with Section 508 and the Americans with Disabilities Act (ADA), Syracuse University and the School of Education are committed to ensure that “no otherwise qualified individual with a disability…shall, solely by reason of disability, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program or activity.”

Special needs is a term that should be tossed into the dust bin of history. As for stating the university is in compliance, that’s simply not true. Hasn’t been true. Not as long as I’ve been teaching here. 

On the matter of “special needs” I like what activist Erin Human has to say:

Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when we require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on. 

That’s the first problem, because access is not “special” for disabled people. It’s our right. The Americans with Disabilities Act of 1990, modeled on the Civil Rights Act of 1964, protects disabled Americans from discrimination, requires us to be accommodated in the workplace, and grants us equal access to public spaces and institutions. Other countries have laws in place to protect disability rights in similar ways.

The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.

To make a metaphor of it, imagine taking a brand new car and submerging it in a lake. The car is disabled; there’s nothing wrong with the car itself, it still does everything it’s designed to do, but it cannot operate in its current environment. If were in an environment well suited to its needs and purposes, like say a road, it would be able to do all the things a car does.

The current environment at Syracuse University, ironically the first college in the United States to offer a disability studies program needs to change for everyone to operate, not merely suited to his or her or they needs and purposes, but with dignity. 

The Blind Guy Persisted….

Because racism, ableism, homophobia, misgogyny are rampant right now at Syracuse University (the story broadly told) I feel unwelcome on campus. I’m blind and have struggled to get basic accommodations as a faculty member for seven years. When I speak about this I’m largely treated to double talk. It’s too hard for this university to make books and articles accessible in a timely way. It’s too hard to assure that sighted support is available to the blind. I’ve been told these things and if I’m hearing them I can only imagine what disabled students are experiencing. Except I don’t have to imagine. They tell me. They tell me over and over what a mean spirited place SU really is.

Yesterday I was told to be quiet. My mistake? I posted a cris de coeur about these problems on a departmental listserv. I was told that my opinions offended people.

That’s of course how ableism works. It offends the ableists to know they’re part of a structural system. They think themselves liberal, progressive, tolerant. Blaming the disabled for calling attention to the problem is Ableism 101.

I said I’d never post to the departmental listserv again.

But I won’t stop talking about the ugliness of higher education and disability discrimination. I won’t.

I love the fact that Syracuse was the first university in the US to formally launch a disability studies program. I’m proud to be an activist faculty member who insists on human rights and who, like my faculty colleagues in many areas of study speaks about the hegemony of discrimination and the role of institutions in the creation of second class status for so many, including the disabled.

Closing, here’s a poem I wrote in the manner of Allen Ginsberg:

America with your history of eugenics.
With your hostility to the global charter on disability rights.
With your jails, stocked with psychiatric patients—worse than the Soviet Union. We are Gulag Los Angeles; Gulag Rikers Island; Gulag Five Points in Upstate New York.
America with your young Doctor Mengeles.
With your broken VA.
With your war on food stamps and infant nutrition.
With your terror of autism and lack of empathy for those who have it.
With your 80% unemployment rate for people with disabilites.
With your pity parties—inspiration porn—Billy was broken until we gave him a puppy.
With your sanctimonious low drivel disguised as empathy.
With your terror of reasonable accommodations.
With your NPR essays about fake disability fraud, which is derision of the poor and elderly.
With your disa-phobia—I wouldn’t want one of them to sit next to me on a bus.
America when will you admit you have a hernia?
When will you admit you’re a lousy driver?
Admit you miss the days of those segregated schools, hospitals, residential facilities—just keep them out of sight.
When will you apologize for your ugly laws?
When will you make Ron Kovic’s book irrelevant?
America, you threatened Allen Ginsberg with lobotomy.
Ameica you medicated a generation of teenagers for bi-polar depression when all they were feeling was old fashioned fear.
When will you protect wheelchairs on airlines?
When will you admit you’re terrified of luck?

–Stephen Kuusisto

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 

Disability Today

Like you no doubt I wake and reach for the newspaper. If you’re younger maybe you reach for your Twitter feed but the instinct to see what’s happened overnight beyond the cave is universal. I’m still a newspaper dude though I view them online with screen reading software. Assistive technology keeps me in the game though I don’t really believe in that term since all technology is assistive whether you’ve a disability or not and there shouldn’t be any categorical distinctions.

Reading the news with a computer generated voice is not a good aesthetic experience. Hearing that a woman has just killed her autistic son with a band saw because “she couldn’t take it anymore” is shattering no matter how you encounter the story, but there’s something about the dolorous and impersonal computer that further shivers one–as if my Mac knows something I don’t. As if the Voiceover software invented by Apple to make all their products usable by the blind has been in touch with Hal from 2001 Space Odyssey and together they know disability doom is coming.

Disability doom is a large subject. From pre-natal testing and the abortion of Down syndrome babies to a new militant rightwing hostility to the Americans with Disabilities Act there’s every reason to think there’s a war on the disabled.

As what’s left of Western democratic traditions wilts under corporatized Neo-liberalism and nationalist populism (fascism) the disabled are in the cross hairs. Everyone’s in the crosshairs: high school children, people of color, women, trans and gay people. Fascism, allowed in the mainstream, sees all difference as deviant. Yet there’s something unique about the disabled: they trigger apprehension across all cohorts of diversity. As people literally struggle to survive, it’s easy to imagine the disabled are a burden. They’re a burden at your rally, your business, and yes, on the streets.

Cries come from all directions: we must get the mentally ill back into gated institutions. If we no longer have money to build these facilities we should put them all in prison. Currently the largest mental health faculty in California is the Los Angeles county jail.

Even as I type there’s a concerted movement on Capitol Hill to roll back important parts of the ADA. Even as I type the unemployment rate for the disabled remains at close to 70%. Even as I type veterans with disabilities are being denied services or or made to wait in line for help–a line that grows longer and longer.

As a poet who’s disabled I know a thing or two about irony. When disability is talked about in political circles there’s an assumption that “they” are not “us”–as if disability is something that happens to some other tribe, as if the disabled aren’t your mother, your father, sister, brother, uncles, neighbors, children, children, children. It’s this othering strategy that scares me the most. When the Americans with Disabilities Act was signed into law in 1990 there was a strong bi-partisan sense that the disabled are us. I think there’s an erosion going on. The irony works this way: we celebrate singular disability achievements–Aimee Mullins running on her blades and wearing designer clothing for the cameras; Marlee Matlin’s acting, Stevie Wonder’s music, and yet we think of them as exceptions, even as we imagine they’re representative of a large population. You can’t have it both ways. The disabled are us. Black, white, trans, gay, women, men, oh, wait I’ve already said that.

Right now I’m on a book tour of sorts. When interviewers ask me about my experience growing up pretending I could see more than I really could, asking as though I’m unique in that regard, I say: “this is not an uncommon story” because it’s true, and also to underscore that the singularity of one blind poet shouldn’t be mistaken for an isolating and categorical representation. The disabled I know, both here in the United States and around the world are struggling to stay in the public square.

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