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,


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

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

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 

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

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 

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

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 

I Just Lost My Civil Rights Thanks to the GOP

Yesterday, February 15, 2018 the U.S. House of Representatives voted 225-192 to gut the Americans with Disabilities Act.   The bill known as “The ADA Education and Reform Act, or H.R. 620” is designed, so its proponents argue, to prevent frivolous “drive-by lawsuits” brought by lawyers who see inaccessible businesses and want to capitalize on the problem. The bill requires those filing against businesses for violating the ADA to first give business owners 60 days to describe how they’ll fix the problem. Then they have another 120 days to implement the changes. Sounds reasonable right? But the bill is actually designed to make the problem of lawsuits go away and does not put any onus on businesses to actually make changes.

As the Consortium for Citizens with Disabilities correctly notes: “H.R. 620 would create significant obstacles for people with disabilities to enforce their rights under Title III of the Americans with Disabilities Act (ADA) to access public accommodations, and would impede their ability to engage in daily activities and participate in the mainstream of society. Rather, the burden of protecting the right to access a public place is shifted to the person with the disability, who first has to be denied access; then must determine that violations of the law have occurred; then must provide the business with specific notice of which provisions of the law were violated and when; and finally, the aggrieved person with the disability must afford the business a lengthy period to correct the problem.”

The “lengthy period” is a red herring as the bill’s supporters know. Again from the Consortium for Citizens with Disabilities: “We know of no other law that outlaws discrimination but permits entities to discriminate with impunity until victims experience that discrimination and educate the entities perpetrating it about their obligations not to discriminate. Such a regime is absurd, and would make people with disabilities second-class citizens.”

As of this morning my civil rights and the rights of over 50 million Americans are now in jeopardy. Like thousands in the disability community I’ve watched with growing alarm as a well organized largely Republican lead coalition both in state and federal government has moved aggressively to weaken or even eliminate the rights of the disabled. Betsy DeVos has instructed the Department of Education to look the other way when matters of equal access for students with disabilities are on the table. Congress and the Trump administration are cutting Medicate.

These are outrageous developments.

Imagine this scenario if you are not disabled. One day you decide to go to a commonplace establishment. A popular eatery or coffee joint. When you get there the owner says, “Well, I don’t like serving  people with cartoon character tee shirts.” Then he adds: “Mickey Mouse violates my decor. And I don’t have time or resources to change my decor” You’re turned away.

Do you think this analogy is fatuous? I admit it seems ludicrous. But the principle is the same. The shop owner has made a decision, rather consciously, that there’s a type of customer he doesn’t want. Rather than admit his prejudice he complains that resolving the issue will likely cost him plenty. He tells you to go away.

Imagine that you then had to explain through lengthy filings why your rights were violated. Then further imagine that the owner has almost unlimited opportunities to do nothing.

How does that grab you?

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

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 

ADA Restoration Act Clears Hurdles

While you won’t hear much about it from the national press the “ADA Restoration Act of 2007” cleared two House committees yesterday with only one opposing vote. (I’ll have more to say on that in a minute…) 

You can read all about yesterday’s proceedings and learn a good deal about the history  of the “ADARA” at the website of the American Association of People with Disabilities (AAPD):    

It is heartening that in a time of divisive squabbling in Washington the cause of Americans with disabilities has once again “shown the way” for true bi-partisan legislation and negotiation.

Disability is universal—it transcends race, class, gender, point of origin, sexual orientation, social status, age, fortune, and happenstance. Just so: the lives and concerns of people with disabilities are in fact the most logical point of “ethos” for a largely divided country to reassert its American values of fairness and decency.

While you wouldn’t always know it from the strident qualities of my prose I am at heart an optimist about the United States. I have lived to see kids with disabilities get a real chance in public education—when, not so long ago I was one of those “mainstreamed” kids who struggled without civil rights or appropriate educational supports. Yes, we’re a decent nation. We’ve come a long way in many areas. There’s reason for  a positive outlook. And yes, there’s also reason to stay strident. Rights and liberty are inconvenient for the ruling classes and we forget this at our peril.

“Aw, c’mon, Kuusisto, you don’t really think we have a ‘ruling class” in the United States, do you? I mean, don’t you agree that we’re a ‘classless society” etc. etc.?”

Continue reading

Civil Rights for People with Disabilities vs. “The Usual Suspects”

Right now, even as we drink our coffee there are powerful forces working overtime on Capitol Hill. I like to call these forces “the usual suspects” because I love the old TV series “Dragnet” and also because it takes too long to type all the acronyms of the various business and human resources lobbying groups that have assembled to fight the “ADA Restoration Act”. Oh yes, and there are prominent corporations opposed to the full inclusion of people with disabilities in the workforce.

The Usual Suspects are opposed to the legislation because it would require that employers actually make reasonable accommodations for employees who have disabilities—rather than allowing said Usual Suspects to proclaim that these accommodations are wildly unreasonable. Why, By Golly! even reassigning a disabled employee to a different but equal job is an undue burden on said Usual Suspect. Enter the extraordinary, well funded, hence powerful Allied Usual Suspects who are working like junior attorneys to “mark up” the bill.

Their aim? To do to the “ADA Restoration Act” what the Supreme Court has done to the original ADA of 1990.  In decision after decision the Supreme Court has exonerated employers from having to make workplace accommodations for disabled employees. The court has used a cynical  loophole when deciding “for” employers against disabled workers: they’ve argued that Congress, in adopting the ADA has assumed the power to regulate commerce within the respective U.S. states—in effect the conservative majority on the court has asserted that Congress doesn’t have the authority to legislate civil rights for people with disabilities—and by extension, for any other group.   

What’s the final final rationale for such a position? Why by God if you give one disabled employee an accommodation well then, by God you’ll have to give all the differently abled people accommodations and heck, that would mean living up to occupational safety and human rights standards and that’s an undue burden on capitalism which, it turns out, doesn’t always see the opportunities for new markets.

So what you do is declare the authority of Congress null and void. You do it by the process of red herring-ism, you confuse the public that the issue is about disabled people in the workplace who are always a suspect group in the view of the general public—aren’t these people faking something? Trying to get an advantage with a better parking space?

If Americans don’t demand of their Congress true accountability on behalf of our nation’s disabled citizens then they are in effect giving away the last measure of our civil rights—the stakes in this argument are really that important.

Write to your Congressman or Congresswoman; take a stand. Don’t let the “usual suspects” continue to evade social responsibility by means of obfuscation.



"Permanent Link to ADA Restoration Act Blogging Round-Up, Feb 11-28 ‘08"