Planet of the Blind – Planet of the Blind

Thirty for Thirty on the ADA

As we near the thirtieth anniversary of the Americans with Disabilities Act I’ve decided to post thirty short essays about the law, the anniversary, and the cultural impact of #ADA @30. I’m doing this as a disabled person who’s lived half his life before the ADA. I’m reflecting on the “before and after” of the law.

Essay 1:

“Bicycle-Blind & Belabored”

In the mid 1990’s just three years after the adoption of the ADA I decided to write a memoir about growing up blind before I had any rights. Nonfiction was suddenly all the rage. The critical and commercial success of books like The Liars Club and Angela’s Ashes brought the memoir to the public’s attention. Where formerly “the memoir” had been the metier of statesmen or Hollywood has beens (I exaggerate only slightly) young writers were sharing stories about achieving self-awareness. The memoir was now about comic irony. Everyone could have his or her own bildungsroman and it was refreshing and by God there was a new law for cripples and overnight we had the public’s eye in new ways. Lucy Greeley’s Autobiography of a Face was brand new as I began my first book, Planet of the Blind. Memoir was fresh; the ADA was new; disabled writers had a chance.

Literature aside this is what the ADA means: the disabled getting their chance. (A joke I love says we call the United States “the melting pot” because scum rises to the top while the people on the bottom get burned.) The disabled were always on the bottom, a fact made all the worse if they were poor, black, or if they were crippled women. America had always believed cripples belonged in asylums, “special” schools, that room behind the family garage—anyplace but the village square. In her groundbreaking 1998 book Claiming Disability Simi Linton presented a new vision of the Parthenon marbles, a bas relief for what the ADA meant and means:

We have come out not with brown woolen lap robes over our withered legs or dark glasses over our pale eyes but in shorts and sandals, in overalls and business suits, dressed for play and work — straightforward, unmasked, and unapologetic. We are, as Crosby, Stills, and Nash told their Woodstock audience, letting our “freak flag fly.” And we are not only the high-toned wheelchair athletes seen in recent television ads but the gangly, pudgy, lumpy, and bumpy of us, declaring that shame will no longer structure our wardrobe or our discourse. We are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth sticks that propel our motorized chairs. We may drool, hear voices, speak in staccato syllables, wear catheters to collect our urine, or live with a compromised immune system. We are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group. We have found one another and found a voice to express not despair at our fate but outrage at our social positioning. Our symptoms, though sometimes painful, scary, unpleasant, or difficult to manage, are nevertheless part of the dailiness of life. They exist and have existed in all communities throughout time. What we rail against are the strategies used to deprive us of rights, opportunity, and the pursuit of pleasure.

It was a dazzling party. Even if disability scholars and writers didn’t quite know each other in the last moments before the world wide web, the ADA had sprung us; provided us with optimism; it gave us what Linton calls the dailiness of life. And along with that came stories. I wrote about being lonesome as a boy, about the hardships of blindness and the static miseries of shame. I described my mother’s terror of disability and how she pushed me to pretend to be normal—a story which is legion among the disabled and is all too often prevalent among people like me who are legally blind. We can’t see well enough to read books, recognize people, read signs—we see like abstract painters. My mother wanted me to go to a public school, not the dreaded school for the blind, and she pushed me into a very unfriendly world always demanding that I never reveal how blind I really was. That was life pre-ADA. Pre-inclusive education. No one in my parents’ circle believed the disabled could pursue pleasure unless they appeared normal. One of the first passages I wrote in Planet of the Blind was a memory about riding a bicycle in early childhood:

I would conquer space by hurtling through it. I wore telescopic glasses, suffered from crushing headaches, but still chose to ride a bicycle—with nothing more than adrenaline for assurance.

How do you ride a bicycle when you can’t see? You hold your head like a stiff flower and tilt toward the light. You think not at all about your chances—the sheer physicality of gutters and pavements. One submits to Holy Rule and spins ahead.

Picture this: A darkness rises. Is it a tree or a shadow? A shadow or a truck? The thrill of the high wire is the greatest wonder of the brain. There is, at the center of our skulls, a terrible glittering, a requiem light. I lower my face to the cold handlebars and decide it’s a shadow, a hole in sunlight, and pedal straight through.

Here’s another shadow, and another. I turn sharply but this time plunge into tall weeds. Insects rise into my hair, cling to my sweaty face. From the road comes the hiss of angered gravel, a car roars past. Thanks be to God! I’m alive in the wild carrot leaf!

I let a bee walk along my wrist, feel it browse on my perspiration. The bicycle coasts, and I squint in the glare, and then I hit a root. As I fall, I take the sting of bee, then the sting of cement. My glasses fly off. The only thing I wonder is whether I’ve been seen. Nothing with this boy must be amiss! He belongs on the street!

Now I’m on my knees groping for the glasses. My wrist has swollen. One wheel is still spinning. I’ve barely struck the ground, and my fingers are everywhere. I must find the glasses before anyone sees me. No one must know how evanescent is my seeing. No one must know how dangerous my cycling really is.

In summary, if I didn’t look normal, if I wasn’t successful in the attempt, then putative strangers would come and take me to the “blind school”—my mother made certain I understood this. She passed her fears down to her altogether trusting little boy.

Pre-ADA was about ugly charades, the “on fire” agonies, the humiliations of passing. God help you if you couldn’t. There would be no public square for you. By this I mean available, open, admissible space. If you were crippled on the street you were subject to cruelty. If you were crippled at the university they’d be sure to tell you to leave.

As late as 1985—yes, believe it—just five years before ADA, I was told by a graduate professor that if I was blind I shouldn’t be in his class. This was at the University of Iowa. That’s pre-ADA in a nutshell. I went to the department chair—he called me a whiner; I went to the Dean, he looked at his watch; I went to the university’s “ombudsmen” (quite a feat since his office was incredibly well hidden) and he also looked at his watch; I talked to the moribund and ineffectual disability support office—they said, the best we can do is give you a note that says you can have more time for exams. The demeaning, bigoted, ableist hostility was untouchable.

I left without my Ph.D. I already had a graduate degree in poetry writing. I packed up. Pre-ADA there was no recourse. If they told you to get lost, well, you didn’t have ammo to fight with.

Those who say the ADA has’t done enough for the disabled are not wrong. And there are still professors everywhere like the late Dr. Sherman Paul who treated me with unspeakable disdain. But post-ADA you can fight back. Post-ADA there are consequences provided you’re willing to snarl and push. There’s still a boatload of ableism around. It may even be fashionable with some. But ableism is long past its sell date and it smells funny—by which I mean you can’t hide it anymore.

I know the ADA hasn’t created lots of jobs and I know it hasn’t changed every mind. Even now the Chamber of Commerce still fights disability rights. Last year with the Chamber’s help Domino’s Pizza tried to say the blind don’t have the right to use their websites—they lost in court—but you see how it goes.

No one should have to risk death to prove he or she or they belong on the street as I had to so long ago. The ADA has driven a stake through that monster’s heart.

ABOUT: 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

(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

Ode to Professor “P”

Not long ago I was called an “ignoramus” by a fellow faculty member at Syracuse University where I teach and run a program devoted to disability research. It is never appropriate to call anyone an ignoramus in an educational setting for the term’s antonym s are “brain “ and “genius” and its synonyms include: airhead, birdbrain, blockhead, bonehead, bubblehead, chowderhead, chucklehead, clodpoll (or clodpole), clot [British], cluck, clunk, cretin, cuddy (or cuddie) [British dialect], deadhead, dim bulb [slang], dimwit, dip, dodo, dolt, donkey, doofus [slang], dope, dork [slang], dullard, dum-dum, dumbbell, dumbhead, dummkopf, dummy, dunce, dunderhead, fathead, gander, golem, goof, goon, half-wit, hammerhead, hardhead, idiot, imbecile, jackass, know-nothing, knucklehead, lamebrain, loggerhead [chiefly dialect], loon, lump, lunkhead, meathead, mome [archaic], moron, mug [chiefly British], mutt, natural, nimrod [slang], nincompoop, ninny, ninnyhammer, nit [chiefly British], nitwit, noddy, noodle, numskull (or numbskull), oaf, pinhead, prat [British], ratbag [chiefly Australian], saphead, schlub (also shlub) [slang], schnook [slang], simpleton, stock, stupe, stupid, thickhead, turkey, woodenhead, yahoo, yo-yo…

As a disabled person I know full well what the delegitimizing effects of language can do to anyone who hails from a historically marginalized background but where disability is concerned the labeling I’ve described has a particularly specious and ugly history. Idiot, moron, half-wit, dolt, cretin are all familiar to the disabled. One would expect relief from these terms at a university. What’s particularly galling is that the subject I was discussing with the professor in question was ableism—namely that I’d said hello to him on an elevator, I, a blind man with a white cane, and he simply stared at me. No acknowledgement. When two students got on the elevator he lit up and talked breezily about how he hates snow. I followed him to his office and said that by not acknowledging a blind person he creates a social dynamic that feels off-putting and I wanted to discuss the matter. He became instantly contemptuous.

Now of course that’s because of the synonyms above. In this man’s antediluvian world view the disabled really shouldn’t be in the academy. Ableism is not only more pervasive than people generally understand its also more consistent at universities than is commonly recognized.

As for me, I’m an ignorant man to professor “p” for that’s what I’m calling him. “P” for privileged.

He doesn’t know it yet, but incapacities likely await him.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(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 or Pertaining to Self Approval in the Age of Airlines

Mark Twain wrote: “We can secure other people’s approval, if we do right and try hard; but our own is worth a hundred of it, and no way has been found out of securing that.”

I like this quote but think Twain got it wrong. As a disabled man I know that I cannot secure other people’s approval so long as I insist on my rights or what we like to call “equal rights” and therefore the only way I can secure self-approval is by insistence. I insist that I belong at this meeting, in this room, on this airplane, in the voting booth, in your taxi, theater, hotel, swimming pool, university, library, railway, hell, even your amusement park.

I do not get customary approval for this entreaty and that is painful, at least on the inside where the barbs from others must go. I secure my affirmation from public resistance and I’ll take my public scorn with a twist of lemon thank you very much.

Last week I had two plane flights where—despite the laws of the land—the airline wouldn’t seat me and my guide dog or “seeing-eye dog” as they’re sometimes called in a place where we could fit. In each case I cited the applicable law (the Air Carrier Transportation Act) which makes it clear that they have to put me where we can fit. And in each case I was treated with absolute disdain and then hostility. The airline was Delta but it could be any one of them.

I was angry, humiliated, and yes, embarrassed for the flight attendants were not only inhospitable they made me the problem. We call that ableism in disability circles and like racism or homophobia it’s all about the knee jerk assumption that someone different is a lesser being and can be treated as such. This is why all bigotry hurts all others. If Chic Fil-A thinks it can object to queer people on a phony religious principle, then they can also object to me and my guide dog. Disdain carries a permission index that’s portable.

The Delta airlines flight attendants not only didn’t care that I couldn’t fit in their seat, they also didn’t care about the law—which says they have to move to a place where I can fit. They did not want to be bothered. The overheated cigar tube was being crammed with passengers, the public address system was smoking with imprecations to tag your bag because the overhead bins were full, please sit your ass down, we’ve got a schedule to keep, etc.

And there I was with a big assed guide dog who couldn’t fit under my feat. I crammed her head under the seat in front of me and sat with my own feet tucked under my ass like a chic woman on a divan. Try doing that for five hours.

The story is worse than this. A woman seated next to me was rude. She didn’t like sitting next to a dog. A flight attendant appeared, (remember, they didn’t try to reseat me) and in front of me asked her if she minded sitting where she was.

I can’t get the approval of strangers and I have no idea what Mark Twain meant. But I have my own satisfaction. I tell the truth. That’s what civil rights are for.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(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

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.

Empty Paths

Don’t sing to me about going down to the Crossroads—
Blind as I am, walking with a dog,
I’m always at lethal intersections.
These are countries without names.
The Devil has nothing to do with them.
Henry Ford sits on his cloud and points.

Read T.S. Eliot in youth.
Now when I go back
I riffle an album full of leaves.

After much is said and done
I made too many mistakes.
Entered strange parlors,
Uttered jokes in poor taste
Among people I didn’t know.
Ate with the wrong utensils.

So he went a long way a long way:
Metaphorical luggage,
Regrets, coins, pocket comb,
Dharma in memory.
Broken thread dangling from his wrist.

Eliot:

“For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.”

Oh but this isn’t so.
The language stretches out.
On the bright side:
Language is a jacket you’re not cold in.

So many times I’ve fallen asleep between two winds.
Even on this street corner.

Adult on Campus

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

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

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

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

In this way I’m an adult.

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.

Fast Virgin Train, Blindness, and the Talking Toilet

If you’re blind and travel you know a good deal about the world of talking appliances which are designed by sighted people and are intended to help people with vision loss but are really rather goofy: elevators that announce “doors open” and the miserable voices of bank machines. But just this week I met the greatest talking device of them all: the speechifying toilet on the Virgin train from Liverpool to London.

Now the Virgin fast train talking toilet (hereafter known as the VF3T) wasn’t designed for blind people. She was created for morbidly depressed travelers. I call her “she” because I’ve been told her voice is that of a woman who won some kind of contest.

Imagine reading an advertisement: “Be the voice of the Talking Toilet!” and thinking it sounds like a great opportunity. You want to break into the big time, be a star of stage and screen. Surely you’ll work your way up from the crapper. (Whatever happened to being on the radio?)

Picture me in the unfamiliar swaying toilet cubicle. No Braille on any buttons. I can’t figure out how to shut the door. A passing stranger reaches in and says, “Here, I’ll press the shut button for you.”

Poof. Door shut. The toilet starts her speech.

Before saying anything more let me just ask: “who thought that giving a toilet a woman’s voice, an actual human voice was a grand idea?” Of course the answer is “a sighted person” for if you’re blind and groping in a vaguely intimidating water closet hearing the following is piercingly bad: 

“Hello there! Welcome to Virgin!”

I was mortified.

Had I entered an already occupied WC?

“I hope you’re having a wonderful day!”

“Did you know there are many splendid traveling opportunities with Virgin?”

“Alright,” I thought, “she’s a toilet bragging about train service. Not a big deal.”

But she continued. She was a kind of self help guru talking up the glories of life, the virtues of moving about the world and the joys of being alive.

The VF3T wants to keep you alive.

The VF3T is designed to prevent disheartened travelers from offing themselves in the loo.

“Aren’t sighted people funny?” I thought.

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(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

Those Old Contours of Ableism

Disability is everywhere once you learn to look for it. Elvis Presley had continuous high grade pain the last ten years of his life. Samuel Johnson was legally blind, suffered from seizures, and may well have had a variant of Tourette’s Syndrome. The people in my neighborhood are touched by disablement. Some show it. Others do not. Normalcy, the belief in it, the animadversion to live it or else is the most destructive fiction in the world. What does it avail me to say so? And why do I keep saying it?

In her excellent book The Contours of Ableism (an elegant title I think) Fiona Kumari Campbell imagines the structural and attitudinal dispositions against the disabled as residing within a telos or set of illusions that maintain the non-disabled identity. When I write against disability discrimination and the privilege indexes of ableism I’m engaging in the work of all disabled activists by asserting the truth of the matter:

“Ableism refers to: a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability then is cast as a diminished state of being human.”

Excerpt From: “Contours of Ableism.” Apple Books.

So if there are so many disabled people around why does compulsory normalization still rule the roost? The contours of ableism are protean rather than strictly geometric.

Fiona Campbell writes:

“Whether it be the ‘species typical body’ (in science), the ‘normative citizen’ (in political theory), the ‘reasonable man’ (in law), all these signifiers point to a fabrication that reaches into the very soul that sweeps us into life and as such is the outcome and instrument of a political constitution: a hostage of the body.”

Excerpt From: “Contours of Ableism.” Apple Books.

One of the interesting things about ableism is that whatever form it takes it occupies the future perfect. There will be time enough to make things right for the non-normals but not today. One may fair say “not today” is the motto of the thing. Non hodie in Latin. Picture a flag bearing the image of an indolent house cat. Not today will we question our assumptions about the majority of bodies on the planet. Ableism also refrains from saying “maybe tomorrow.”

Have Dog, Will Travel: A Poet’s Journey is now available for pre-order:
Amazon
Barnes and Noble
IndieBound.org

(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

Grievance in America, 24-7, No Matter Who You Think You Are

Americans are uncomfortable with their bodies which means they become militant when they claim the body as a marker of identity. I have done this. I’m blind. I’ve written extensively about the joys of being who I am. The body is not receptive to what I may say about it. That’s a sad fact. Society is only conditionally receptive to what I may say about it.

I identify as disabled. I have to. I’m not going to navigate the world with safety if I don’t use the proper accommodations for vision loss. Then I say, “I have no loss.” I claim my utility and Jeffersonian right to pursue happiness. I’m not lost. I don’t need to be found. I don’t need salvation.

When you claim your body in America you enter a honeycomb of some complexity. How many billions of dollars are spent on advertising that urges people to feel more than passing disdain for their very physicality? No, I don’t want to look it up.

I’m for all the body rights movements but I’m never tricked into thinking that by hugging my body I’m free of the contempt mechanism. It tends to have the last laugh.

If you claim to love your body but spend all your time hating the compulsory normative complex—you shouldn’t be gay; fat; a wheelchair user; blind; deaf; get a cure or purgative—you know the drill, you will spend your life railing against the dominant culture to such an extent you’ll become, quite possibly, a victim of your own identity rage and to such an extent you may not be able to function outside of a small colony.

Which leads me to the problem I’m struggling with. The small colony habituation of Americans who struggle with self-contempt, which is never overcome with slogans or cultural theories alone, lends itself to unhappy clusters of victimhood. This is fully democratized which means Trump voters, Bernie voters, civil rights activists of every calling, can all be classified as either potentially or fully against civics.

You’re not supposed to like your body. You’re encouraged to prefer happiness to the daily grind. Americans are conditioned to feel deprived of easy joy. Someone else is always getting happy. If you believe advertising, you’ve a big and weak superego. I think it was Kurt Vonnegut who pointed out that Americans have so much self contempt that when they jumped out of airplanes in WW II they shouted: “Well, here goes nohin’!” He also noted that the chief expression of interpersonal disdain in the USA is: “If you’re so smart why ain’t you rich?”

Enter Trump voters. Vonnegut would understand them. Trump both deflects and extends their self-contempt. They’re not happy because others are stealing their joy potential. They’re not rich and Trump tells them over and over it’s not their fault it’s because of foreigners or elites or people of color or you name it. “If you’re so smart why ain’t you rich?” becomes a license to bitch, rage, be violent, taunt anyone who you believe is in your way.

These ghosted body-contempt dynamics are equally true across the proverbial aisle. Bernie Sanders voters believe others are stealing their wealth, their autonomy, their hopes and dreams. Again it’s others who are doing this—and again there’s the license to bitch, rage, and taunt anyone you believe is in your way.

One sees this on the contemporary college campus where progressive students rage against multiple systems they believe are stealing their joy potential. Capitalism, classist society, patriarchy, big pharma, polluters—all of which are very real mind you—are given undue positions in the honeycombed privacies of the mind (to borrow from Melville) until, yes, one has a license to bitch, rage, be violent, and taunt anyone who you believe is in your way. I’ll argue that these reactions are deleterious to students for it gives them the false assurance that aggrieved identity is all anyone needs in the village square.

Body claiming is crucial as a first line of defense against racism, homophobia, ableism, misogyny, and all other commodified disdain for our physical lives.
But it can become amber to the fly. Grievance is in the glue. The best thinkers acknowledge oppressive systems and live beyond mere victimhood.

In a recent review of some new books about the opioid epidemic in the USA Emily Witt quotes a writer who goes by the moniker “Anxious Dope Fiend” who writes of the joys of oxycodone:

The oxycodone experience is difficult to describe to an opiate virgin. Personally, I feel as if I have suddenly gained all that I want in life and no longer have anything to fear. I am perfectly content both mentally and emotionally. All the tension slips from my body and I feel warm and utterly comfortable, as if I were sitting beside a roaring fire, wrapped in a delicate cashmere blanket, rocking gently back and forth. Communication is pleasant but unnecessary. Under the influence of oxycodone, no companionship is needed. I accept myself and the world just as we are, not begrudgingly, but eagerly, ecstatically even.

Is it just me or do any of my readers also wonder if this passage represents the perfect synthesis of grievance culture?