writing – Planet of the Blind

Of Gratitude, a Heart Attack, and Poetry

One year ago today I had myself a heart attack. To be honest I actually had the symptoms of heart failure over a period of about ten days. I honestly believed that I’d pulled a muscle in my sternum while lifting a carry on bag into an overhead compartment when boarding a plane. I made the classic mistake of googling my symptoms. A pulled sternum muscle can, said AI, cause shortness of breath and pain in the center of your chest. Put ice on it, or heat. Take Advil. Etc. I flew from upstate New York to Iowa City to visit a friend who’s been unwell. We walked around the town. We strolled beside the Iowa River. We’d walk a few feet and then I’d have to sit down. I explained my muscle pull. I had no idea I was having a full blown heart attack. When I returned home to Syracuse, New York I again had trouble walking across campus. I asked a friend if she could carry my brief case. It was that muscle thing. I went one more day believing I had simple strain. And then, on Good Friday it came over me, I was having a heart failure. The thing that put me over the top was that I had the compulsion to lie down. And a little voice in my head said, “you’re not going to get up, this is a serious moment.”

My wife Connie drove me to the emergency room. There are multiple hospitals in Syracuse. I chose the closest, “Upstate” a teaching hospital associated with the State University of New York. It didn’t take them long to confirm that I was having serious heart trouble.

My father died on Easter Sunday from a sudden heart attack. Here it was, Good Friday. Would I also die on Easter? I wanted to call Carl Jung on the phone. I wanted someone to tell me about magic numbers and fate.

I won’t go on about the triple bypass surgery, which is physically devastating. It’s taken me a year to feel like myself again. Today on my anniversary I’m almost me. Sometimes when I move my upper body I can feel the wires holding my chest together—there’s a little shift inside me like a transmission that catches when accelerating. This is normal. Its not painful, just weird. And of course while I say I feel like me again I’m not the same me. My rebuilt chest is misshapen. The long incision scar remains tender. I’m told that’s likely permanent. And I take a veritable armada of pills. Blood thinners, blood pressure pills, a daily statin bomb, vitamins, a baby aspirin. And there’s another pill which I don’t remember and can’t say what it does but its small and always drops to the floor and being blind I have to get down on my hands and knees and grope for it lest a dog come along and eat it.

My surgeon, the man who saved me, is a refugee from Iran. He came here as a young man. He’s arguably one of the finest heart surgeons in Syracuse. On the night before my operation we talked about Persian poetry. I felt lucky, even under tremendous stress. I felt cared for.

One of my resolutions is to never overlook the happiness of others. At its core this is pure democracy as Jefferson knew it. You have the right to pursue happiness and my job is to help you find it. I really mean this. I’m currently raising funds in order to publish first rate books of poems by disabled poets. I’ve published six books in this series https://www.ninemile.org/propeland will be releasing two more this summer. In these dark times we each have a job. And because I’ve received a second chance at life I like to imagine I know what to do.

Each morning I gather mosses…

Each morning I gather mosses, even in January, even when bending to customary tasks. Washing dishes, I touch the moist earth. It’s a game I play to keep alive.

Generally, I think human beings would be better creatures if they talked with their feet.

Go on. Push the child you once were into the deep end. The kid will do fine.

A memory: just before heart surgery (mine), one of the hospital interns who spoke no English tried talking to me using a translation app on his iPhone. But I couldn’t read it. I was thinking about the probability of death. And we couldn’t talk.

Now give me that damn candy and leave me alone!

Trying to live well and grieving all the time. You’re one of them, those others.

You know all those “top ten” lists. Here’s a new one—top ten dream clots:

Talking to a dead mother on the phone while a dead father stands over your shoulder and tells you what to say…
Buying strange bread in a foreign land with your hands tied behind your back and a gag in your mouth…
Old acquaintances gathered in a gentle place, a room with soft lighting, and all the old wounds and wrongs have been forgiven. Trouble is, we were in a funeral home. And one of us, probably me, had tracked dog shit all over the fancy carpets.
You’re pretending to see as you did during childhood. You’re in the softball game. Nothing you do will lead to a good outcome. But you want so desperately to fit in.
A train and you’re on it. Perfect. And your uncle who was sinister in life is next to you talking about vodka.
Dreaming
Of the little girl
Who was beside me
In the infant hospital
All those years ago
Blind children
Side by side
Her singing
Savage laughter
You see yourself in mirrors
Them ovoid ass bad pants
A mannequin’s poor dream
Mozart

Improbable yes but I dreamt of him
And though we were in a room
Rain fell and it was beautiful
Water coursing down the walls

“We only get so much”
He said—“opera is for the young”
“String quartets, for dying”
He was there alright

I tend to not have nightmares. My dreams are odd though. They tend to be like Elizabeth Bishop’s poem about waiting for the dentist.

I recognized they weren’t living men
There was a blind man there, not me,
And he had a dog, not mine
In the cafe
With red curtains
My twin brother
Who died at birth…

Spinoza and Giving Up on Contemporary Fiction…

If, like me, you admire Spinoza, you’re a problem. Here’s a spoonful:

“Those who wish to seek out the cause of miracles and to understand the things of nature as philosophers, and not to stare at them in astonishment like fools, are soon considered heretical and impious, and proclaimed as such by those whom the mob adores as the interpreters of nature and the gods. For these men know that, once ignorance is put aside, that wonderment would be taken away, which is the only means by which their authority is preserved.”

False wonderment and ignorance. The peanut butter and jelly of American society. Yum yum! Donald Trump is selling bibles! Yum yum! The mob can’t get enough. Spinoza of course understood the role of clergy in the promotion of faux miracles. If you truly believe this then you’re the problem. You’re the problem in almost every group. You’re always going to ask “what’s wrong with this story?”

Ernest Hemingway called this sensibility the “bullshit detector” and he was almost right. He meant that first rate writing uncovers or subverts falsities. But what if the dominant narrative of your age is all nonsense? Americans are intensely attracted to victimhood. Everyone is now an undeserving wretch.American fiction is, nowadays, almost entirely unreadable. Every new novel is concerned with sub-Cartesian victimhood. It is unbearable. Do you understand false wonderment? Three divorcees go to a summer house and while walking through a tangle of spider webs come to understand themselves. The interpreter of nature and the gods is Dr. Phil. Self-help tabloid fluoride is in the water.
Yum yum! I’ll get no credit for saying this. I’ll likely be attacked. And don’t read this as an attack on women writers. Men are equally caught up in the sad victim story telling industry. In fact everyone is caught by the shoelaces with this collective hive drone.

Someone recently asked me what fiction I was currently reading. I’m reading about evolution.

How many burdens do you carry daily?

How many burdens do you carry daily? If I ask myself this question I admit I don’t know the answer. It’s like asking “what should I be doing?” It’s a fool’s game.

Here’s the problem: I carry some baggage because I’m disabled. “No big deal,” says the heart (which I’m told sits reliably in the center of the chest and not to the right hand side as depicted in cartoons.)

The heart is optimistic. It knows it must be. Every pulse beat is optimism.

Now the brain is different. It’s read Duns Scotus and Neruda and Kafka and Hannah Arendt and Frederic Jameson and “Maggie: A Girl of the Streets” and at least a thousand books on disability and who knows how much gloomy nonfiction—so the brain is disposed to contrarian thinking whenever joy comes up.

Alas my brain is more than a little bit like my Finnish grandmother.

Her name was Siiri and unlike her Apple namesake she was gloomy. She couldn’t help it. She was very Lutheran and her husband was a minister during the Great Depression and they’d come to the U.S. to escape hunger and why wouldn’t you become cautionary and somber in the face of a world of gravity and scarcity?

I don’t know about you but I’ll take gloom over despair. I know about this. I have depression as well as vision loss. I ride two horses, one black and the other white. Or something like that. Maybe I’m a shark with two brains: one of appetite and the other of more appetite.

I don’t know as much about the mysteries of consciousness as I pretend.

But I know this: the burdens I carry are the burdens of others.

If the subject is disability, well, I speak up for disabled faculty, students and staff who struggle to acquire basic accommodations both in my own workplace and around the world.

Burden number one: this can make me unpopular. As with racism or misogyny or homophobia the advocate can be characterized as a malcontent almost instantly.

I’ve never completely gotten used to this. The “this” being disapprobation for speaking out against ableism.

I read as much as I can by scholars and poets of color; gay and trans writers; black writers; women writers. And yes, men. I’ve yet to find anyone who’s more deep tissue wise than Walt Whitman.

Last week I participated in a live online town hall discussion about service animals. In the Q &A period several apparently non-disabled questioners asked things phrased thusly:

“Do we have to?”

As in “OK, service animals are legally allowed to enter my space, but can’t we tell those darned blind people where they are to make their dogs relieve themselves?” Or: “OK, a child with a service dog comes to public school—do we have to help that child?” (As if being disabled requires extraordinary extra help; as if a disabled child is a burden.)

I became upset.
I said the following:

“I went to public school before the ADA. I have been told by teachers and school administrators that I’m inconvenient; or worse—that I don’t belong.”

“Frankly, I hope there’s a room in Hell for school administrators where they’ll get to sit throughout eternity with Joseph Stalin, Richard Nixon, and the man who invented the roach motel.”

Then I signed off.

I’ll never not be offended by ableism.

I’ll never sanction the winks.

Just try those questions out if you substitute race or gender or sexual orientation for disability.

How many burdens do any of us carry?

They’re much lighter when we hold them up to scrutiny.

Big Men Be Victims…

I’ve never been good at organizing. I could screw up a “one car funeral” as my maternal grandmother liked to say. She never said this of me. I was too young. One supposes childhood gives one an inoculation against incompetence. Which gets me to my question: at what age does the incapacity vaccine wear off? The poet Robert Bly argued American adults have the emotional maturity of eleven year olds. He further argued that television and all pop culture is designed to enforce this. If men, and yes, women are eleven forever than the culture has done its job. I find I can’t be persuaded to abandon this view.

Barack Obama was in fact an adult. He was a neighborhood organizer before turning to politics. I think he was the last fully fledged grownup to occupy the White House. Biden was old but his lack of personal irony made him more of a boy than we generally admit. We have had very few adults in the presidency. You can count them on one hand. Eisenhower, Truman, FDR, Lincoln and Washington—the rest have been boy-men despite their accomplishments. Andrew Jackson? Child. Teddy Roosevelt? Child. No one knows what Calvin Coolidge was. Jefferson, for all his intelligence, was peevish.

This is why as democracies get tired the people want a Big Child to lead them. All tyrants are eleven year olds. You know who I’m talking about. Here are some characteristics of fifth graders: Very sensitive to praise and recognition; feelings are easily hurt; Because friends are very important, can be conflicts between adults’ rules and friends’ rules; Caught between being a child and being an adult; Loud behavior may hide their lack of self confidence; Are moody, restless; often feel self-conscious and alienated; lack self esteem; Challenge authority figures; test limits of acceptance…(see: https://www.seedlingmentors.org/developmental-characteristics-of-eleven-to-thirteen-years-old-grades-6-8/)

Bly puts it this way: “The inner boy in a messed-up family may keep on being shamed, invaded, disappointed, and paralyzed for years and years. "I am a victim," he says, over and over; and he is. But that very identification with victimhood keeps the soul house open and available for still more invasions. Most American men today do not have enough awakened or living warriors inside to defend their soul houses. And most people, men or women, do not know what genuine outward or inward warriors would look like, or feel like.”

― Robert Bly, Iron John: A Book About Men

When I see Putin or Trump I see baby men with toy soldiers. And yes, they feel like victims…

Yeats and Ruth Benedict

“Experience, contrary to common belief, is mostly imagination.”

  —Ruth Benedict

You can cross the snowy fields and see castles and diamonds because imagination is there. In Scandinavia they call it troll power. You know the world as trolls do. This is why children can’t answer the question “what did you do today?” And its why poets can’t reply honestly when asked “where did you get that idea?”
When imagination rules experience we’re at a loss for words, at least at first. Later we grow up—the editor inside us who’s an adult tells us experience is not of the imagination at all. In general this is what MFA programs do. The study of creative writing is good for the delete button. When Yeats writes of faeries he’s telling us to resist this. In his 1901 essay “Magic” he says:

“I believe in the practice and philosophy of what we have agreed to call magic, in what I must call the evocation of spirits, though I do not know what they are, in the power of creating magical illusions, in the visions of truth in the depths of the mind when the eyes are closed; and I believe in three doctrines, which have, as I think, been handed down from early times, and been the foundations of nearly all magical practices. These doctrines are —
That the borders of our minds are ever shifting, and that many minds can flow into one another, as it were, and create or reveal a single mind, a single energy.
That the borders of our memories are as shifting, and that our memories are a part of one great memory, the memory of Nature herself.
That this great mind and great memory can be evoked by symbols.”

Yeats had a different view of symbols than the Constructivists or Surrealists. He took them quite literally. The poet Kathleen Raine wrote: “For Yeats magic was not so much a kind of poetry as poetry a kind of magic, and the object of both alike was evocation of energies and knowledge from beyond normal consciousness.”

“A kind of magic” begs the question “what kind of magic?” Only Yeats could answer this and he spent his life working to do so. But at its core he believed the magic resided outside the mind. The poet’s job was to translate nascent signals of mystical experience into ordinary language. He loved Newton’s alchemy; Hermes Trismegistus; most of all he loved the story tellers in the Irish countryside—that place and culture vanishing before his eyes. What kind of magic? Preservational. Yes belief is mostly imagination. And the evocation of spirits though we can’t say who they are. This shouldn’t stop poets from trying.

The lived circumstances of disability are contemporary disruption…

The lived circumstances of disability are now at code red in the United States. From the dismantling of the Department of Education (which has historically supervised ADA compliance in schools—from kindergarten to universities) to denying benefits for people who desperately need Supplemental Social Security the disdain and cruelty are “on” as they used to say on the radio. WE are ON WITH 50,000 WATTS OF rock and roll power!

I spent part of this morning walking around the campus of the University of Iowa where I studied creative writing long ago. Later I came back to teach here. The U of Iowa has always been a disability unfriendly place and now, in Trump 2.0 they’ll be free of any corrective government action. This ain’t just the case in Iowa. As colleges and universities ditch their Diversity Programs, many of them are shoving disability compliance under the bus as well.

I’d be in despair if I wasn’t already in despair. Meanwhile I’m reading “After Disruption: a Future for Cultural Memory” by Trevor Owens. It’s just out from University of Michigan Press. He has many arguments in the book and I won’t highlight all of them—the book is nuanced and shrewd. But one salient contention is that the takeover of our public square, pushed as it is by big tech, is powered by the language of “disruption” which of course reminds one of Elon Musk waving a chain saw while high on Ketamine.
The really interesting thing is that according to Owens the premonitory language of disruption was adopted by Silicon Valley from the academy. I confess to never having thought of this. Disruption in feminist studies or disability studies has always meant the ways in which outlier bodies interfere with normative narratives. This much is true and is still true and will always be true. But by adopting the lingo of disruption the Peter Thiels of the world have been able to push the idea that AI and the erosion of the humanities are excellent things. I urge you to read Owens book. But here’s a quote:

“When Silicon Valley co-opted the vocabulary of disruption, it removed the genuinely radical ideas that had come from feminist critical race theory and shifted them into a blunt fear-inducing instrument. While the rhetoric around disruption often comes with a revolutionary sentiment, at its core, disruptive innovation’s roots are in fear. This rhetoric is about making us afraid and pushing us to believe that Silicon Valley has the secrets to how we address the fear of being made obsolete or being replaced.”

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 disabled 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 discrimination. BTW: ableists also avoid saying “maybe tomorrow.”

If you require accommodations “Non hodie” is the prevailing reply. What’s so demoralizing is that those who ought to be in the fight for disability inclusion are not interested. How can this be? Well, actually, the matter is simple: “there will be time enough to make things right, but not today.” That this “non hodie” includes administrators and faculty tells you how big a muscle ableism really is. But there’s another issue…

And of course there are gaslighting committees—they have names like “Inclusion and Access for One and All” and they meet privately because its all about “non hodie” and private self-congratulation. The folks on these committees don’t suffer from a lack of accommodations. In general they feel pretty good.

Which gets me back to Owens. Feeling good in today’s universities and in the United States has been replaced by resignation, precarity, and a new form of future perfect. Owens expertly explains this contemporary dread. Your embodied disruption is too disruptive. But it all sounds so good:

“Disrupt. Fail faster. Asking, in almost any meeting, “but will it scale?” Over the last three decades the language of Silicon Valley start-ups and venture capitalists has followed digital technologies into a wide range of industries, cultural-memory institutions included. This vocabulary, which historians of technology Lee Vinsel and Andrew Russell call “innovation-speak,” is now a core part of management cultures across the US and beyond.”

I urge disability activists to read this book.

Who is Andrea Bocelli?

Who is Andrea Bocelli? Does he really love Donald Trump? Is he truly clueless about the devastating policies aimed at disabled people that are in effect because of this White House? I can answer the last two but not the first. As to who Bocelli is I can only speculate. Meanwhile his fan fest with Trump has led, predictably to ableism. Social media trolls are employing blindness as metaphor. The theme? He’s blind to reality. Ah, the old blindness is ignorance trope. How we’ve missed you! Yet another post suggests he’s a “dumb Italian”—another slur I thought we’d finally gotten rid of. My belabored point is that after years of Trump the “left” in these United States feels free to be as objectionable as the GOP. And of course ableism knows no party. The cripples know this.

As for the first question one can only speculate. Bocelli is stage managed. Lives in a bubble. He has no idea about the horrors of blindness in his own country much less in the US. Some years ago I traveled to Italy with my first guide dog and was treated with contempt. It was everywhere. It wasn’t just a lack of knowledge about disability rights. T’was outright disdain. Bocelli must have encountered this, at least in childhood. And I’m guessing his defense mechanism was and is, “I’m not one of you.” I’ve met a few well heeled blind people who have done this. Notably an arch conservative federal judge who had deep pockets and sneered at the blind. I once told him off. He’d characterized the blind clients of a guide dog school as “mooches and leaches…” (And you betcha, he was on the board of directors.) You betcha. Being blind and thinking yourself superior to those other blind people is both not uncommon and a trap. And the only way to avoid that trap is to live a fully protected and curated existence.

And of course maybe Bocelli is just an ass. A vain ass. A chauffeured ass. Yep. I can only guess. But I’ve see such people before.

I think of Ludwig Wittgenstein some mornings…

I think of Ludwig Wittgenstein some mornings. He occurs to me very early. Usually it’s this quote that pops into my waking noggin:

“Death is not an event in life: we do not live to experience death. If we take eternity to mean not infinite temporal duration but timelessness, then eternal life belongs to those who live in the present. Our life has no end in the way in which our visual field has no limits.”

I like this for lots of reasons. As a blind man I like the temerity of the utterance, insofar as all humans have some kind of visual limitation. Wittgenstein posits the power of imagination to declare anything, and then, with a smear of logic, cements an idea into consciousness. I think this is how he survived the trenches in WW I. And I know for certain its how the disabled survive. Look at the nouns:

Death. Event. Life. Experience. Eternity. Duration.

In my sophomore year of college I was fascinated by Boolean algebra. In mathematical logic, Boolean algebra is the “branch of algebra in which the values of the variables are the truth values true and false, usually denoted 1 and 0 respectively.” (See Wikipedia.)

One may easily draw a Boolean equation for the proposition eternal life belongs to those who live in the present. Then there’s a leap—Wittgenstein says our visual field has no limits.

If eternity = timelessness then the present (time) also equals timelessness. Good.
If timelessness is related to mindfulness then the operations of mind become vision. Hence our visual field (anyone’s) has no limit.

You can see where the poet in me would like this. You can see where the blind person in me also admires it.

As logic it is unimpeachable. The trick is to live it.

Early. Wittgenstein for breakfast.

Thinking of Rousseau on a Rainy Morning

If like me you’re disabled you’ve probably thought about being cured. As I’m blind this would mean having 20/20 vision. I don’t think about it much, but when I do I picture myself on a motorcycle, letting it rip. This is a personal version of fool’s gold.

The idea of “cure” is painful for the disabled. Medicine says we must be fixed or be seen as permanent defectives. Most of us cripples have been told we’re faulty over and over. It’s not “cure” one wants, its freedom from being flawed and suspect in the village square. If I could see and take off on a Harley I’d still remember the struggles of this disability life.

Jean Jacques Rousseau had a dog named Sultan who accompanied him to England when his life was threatened in France. Poor broken Rousseau with his malformed urinary tract, cloying hypochondria and hot paranoia–also poor in cash, resolutely poor in friendships. Sometimes we think we understand him–we, the descendant cripples–those who spent fortnights alone in childhood and more than once. We who occupied our attentions with flowers and seeds. Rousseau had the triple whammy: his mother died when he was very young, then his father ran away. He was forced to learn the baleful adolescent art of beseeching strangers for protection and love. He was easily tricked into churches and bedrooms. And he was easily discarded. The cripples understand this.

No wonder he discarded neo-classicism for what others would call the romantic. No wonder Shelley and Byron adored him–passions of betrayal and resolution always feel the most authentic. Rousseau’s enemies substituted “savage” for “authentic” and prided themselves for calling him “uppity” which is of course what is generally done to passionate cripples. Small wonder Rousseau took up the matter of social consent among the governed.

Sultan lead him into the English countryside where he seldom encountered another soul. I love knowing this. A dog can stir and extend solitary human concentration which is the reward of stigma, but you must understand it in a canine manner–pay attention to what’s here and here; not yesterday; never tomorrow; and yes, a dog looks the other way when you take from your pocket a handful of French seeds and push them into British soil.

“So here I am, all alone on this earth, with no brother, neighbour, or friend, and no company but my own. The most sociable and loving of human beings has by common consent been banished by the rest of society. In the refinement of their hatred they have continued to seek out the cruellest forms of torture for my sensitive soul, and they have brutally severed all the ties which bound me to them. ”

He was in fact disabled by malformations of his nether parts and he had profound depression. Being a liminal figure owing to these conditions he was caste out by the congealing engines of 18th century normalcies. On this the aristocrats and the bourgeoisie could agree—the salon, the atelier, the coffee houses were not places to be troubled by the inconveniences of broken embodiments. Having a troubled body meant staying away—meant the asylums and hospitals. It meant living in the poor houses. Good bodies meant public bodies. Rousseau’s solitary journeying on foot is disability journeying. He was Basho, a travel weary skeleton.

Poor Roussea! He had porphyria which lead to abdominal pain and vomiting; acute neuropathy, muscle weakness and seizures; hallucinations, anxiety, paranoia—and as if these weren’t enough he had cardiac arrhythmias. He was by turns aggressive, provocative, contrarian, and yes, he was always ill.

Today in the disability arts community we talk of disablement as epistemology. We know altered physicality and neurodiversity offer unique and valued ways of thinking. What’s different now from Rousseau’s time is that the disabled are not as easily caste aside, and though this can be done (one thinks of all the micro aggressions the disabled invariably experience even now, arguing for accessibility, making their point for inclusion and respect against structural ableism) it’s no longer possible to lock the gates of Geneva on that annoying cripple.

On the subject of micro aggressions much of the Reveries of a Solitary Walker tells of the slights and the disdain Rousseau absorbed and encountered. He was in fact an unpleasant man. I too some days am an unpleasant man. Human rights and their advocacy demand it. Seldom does progress develop for polite societies. But I’ll add also that in Rousseau’s time there was no language for depression—the term itself comes from an age when treatment and acceptance are commonly understood. Instead it was called “melancholia” and it was considered a form of madness. You don’t have to read Foucault to know what happened to the mad though why shouldn’t one recommend it? In any event Rousseau lived in an age when mental illness was believed to be a moral failing. This sub-Cartesian idea has never gone away.

I’ll let Rousseau have the last word:

“Always affected too much by things I see, and particularly by signs of pleasure or suffering, affection or dislike, I let myself be carried away by these external impressions without ever being able to avoid them other than by fleeing. A sign, a gesture or a glance from a stranger is enough to disturb my peace or calm my suffering: I am only my own master when I am alone; at all other times I am the plaything of all those around me.”