June Notebook

Summer Fog

I want to claim you.
I love the way you make the pines somber
And blind though I am
I too balance the leaning graves.

**

Avant Propos

One night in Toronto twenty years ago I was awakened in a high-rise hotel by a drunk singing Puccini’s “Che gelida manina” with fierce passion. He wasn’t half bad. I could tell he was in his own darkened house. Soon enough a security guard turned up. I heard a radio crackling. The cop said: “OK, Caruso, that’s enough now!”

The real Caruso would have like that moment. He once said singing required sorrow. He said all true opera singers have suffering inside. Opera or not it’s true: we cannot bear disaster. In turn we live closed up or else we sing. I walk around and though I can’t see them I know the strangers surrounding me are cast down. Sometimes I hear them humming to themselves.

**

As the Swedish poet Gunnar Ekelof wrote: “you see your life for what it ought to be,/and ought to have been.”

I’m going to listen more.

**

I was alone but not unhappy. That was the thing. Wind up the Victrola, listen to incomprehensible words and musical notes. Sometimes hornets flew over my head. Was it Caruso who kept them away? Whatever the case the hornets never bothered me. The snick of the needle hit the outermost circumference of disk. The systolic static from the horn. One more second and the music starts.

**

I was a poet before I was a blind boy. There, I’ve said it. Bullies can go to hell.

Now and then one recalls hiding under the sink, playing with a wooden top.

In the woods bluejays and crows had a game which I studied every chance I had—they pretended to substantial bones.

And meanwhile darkness surrounded the eaves of the house…

**

Oh Schubert you are such a bother for you were perfect. Even as you died. You went out listening to Beethoven’s string quarter #14 in C-sharp minor, Op. 131. Your friend Holt commented: “The King of Harmony has sent the King of Song a friendly bidding to the crossing.” Never mind the syphilis, the mercury poisoning, the blackened teeth. The best I can say is “never mind” like the barn owl—“the moon is perfect, never mind” and never mind getting lost in perfection.

This is how it’s done. The clocks may or may not be sad. Leaving the world in C-sharp minor.

E is the only major in C-sharp minor, but you can’t leave on E alone. Departure requires several dark feathers.

**

When I was a boy I thought I heard a voice coming from inside a window. Just a small auditory hallucination on a slow summer day. Here’s to conversant glass in an old house.

**

When I play Schubert on the hi fi I’m calling him on the Schubert phone.

**

I know so little and so I’m uncomfortable. I should know more about the stars and the gods of other ages. I should certainly know more about card games.

**

Now. Schubert insists on the river flowing out of now. This is the core of what the critics in their heavy boots call “Romanticism.”

**

Here’s to the Schubert singing windows and the Schubert rivers.

**

I’m not important. What a relief.

Disability and Deadly Silence

70 plus years ago the Nazis exterminated the disabled, a matter that still remains obscure to many of our regular customers by which I mean “the public.” (In my experience when you’re forced to use “the public” in any rhetorical sense you’ve already been exiled.) But today I’m not exiled. I’m aware of epochal events, mindful of how they continue to influence us. The murder of 19 disabled citizens in Japan by a man whose manifesto called for the extermination of crippled people garnered less than adequate attention in the world press, a fact that horrified disability rights activists across the globe. In her excellent article “Why did the mass murder of 19 disabled people in Japan barely rate?” Carly Findlay wrote:

“This massacre is Japan’s biggest mass killing since World War II. Yet coming as it did amidst a series of ISIS-related terror attacks and unrest around the world, the media has been relatively quiet about this shocking attack. While I acknowledge the existence of compassion fatigue, I couldn’t help noticing there was little social media solidarity – unlike for Paris, Nice, Orlando, Kabul, Baghdad. There was no hashtag. No public outcry. Not even prayers. When I posted about it on Facebook, people told me they hadn’t heard about it. 

In this age of algorithmic curation, it’s no wonder this hasn’t been popping up all over our newsfeed: barely anyone is talking about it. Very few people are talking about the targeted massacre of 19 disabled people.”

The murders in Japan raised an epochal question: “whose lives are finally, expendable in a neoliberal age of global human devaluation?” Note, I’d not have written this ten years ago as I’d have thought I knew the answer—the “inconvenient lives” of post-colonialism: Rwanda, Sudan, Iraq, but surely I’d not have said indifference to the murders of disabled men, women, and children was a de facto condition. I’d have been wrong ten years ago; insufficiently informed; limited by my own provincial belief that the Americans with Disabilities Act and the advent of Disability Studies portended advancements beyond the Ivory Tower, that the age of disability dignity was arriving, had arrived, would simply get better and better.

In his book The Biopolitics Of Disability: Neoliberalism, Ablenationalism, And Peripheral Embodiment David T. Mitchell uncovers some of the dynamics of neoliberalism’s approach to the disabled body—barrier removal and an understanding of the very real effects of physical incapacity are nowadays routinely encoded into a globalized social contract. What Mitchell aims to show (among other things) is how the lived experience of disablement is not understood—that what we have is tolerance but not a deep embrace of disability based cultural practice. In turn, the absence of this embrace leaves open a broad incapacity (both locally and globally) to understand the alternative body, its diverse embodiment as something at once both real and abiding. The press can’t report on the murders in Japan because it has no vocabulary, no idiom, no reference point for understanding crippled lives as being rich and valuable. No language, no conception. No conception no reporting.

Those of us who teach disability related subjects from an inclusive set of discursive practices acknowledge the opposition: the squinting, rebarbative bio-ethicist and philosopher Peter Singer who has long argued disabled infants lack social value; the contemporary best seller by a middling and moist writer named Jojo Mayes which suggests a paralyzed life isn’t worth living.

We also don’t forget that inclusion within the world of neoliberalism is never an embrace but a form of sufferance. We’re allowed to be here and often barely. This is hardly hysteria. One merely has to consider how recent remains the publication of Robert Jay Lifton’s The Nazi Doctors which stands as a testimony against eugenics and human experimentation—the broader knowledge that disability is fraught with horror still remains poorly understood. Small wonder then, that the words of 26 year old Satoshi Uematsu who stabbed 19 disabled people to death in Japan should haunt the cripple-community, while seeming so foreign to reporters. This is what he wrote in his “manifesto” where he explains his butchery:

“My reasoning is that I may be able to revitalise the world economy and I thought it may be possible to prevent World War III.

I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.

I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind. Let Japan take the first big step.”

Consider in turn the following prose from the US Holocaust Museum’s website:

On July 14, 1933, the German government instituted the “Law for the Prevention of Progeny with Hereditary Diseases.” This law called for the sterilization of all persons who suffered from diseases considered hereditary, including mental illness, learning disabilities, physical deformity, epilepsy, blindness, deafness, and severe alcoholism. With the law’s passage the Third Reich also stepped up its propaganda against the disabled, regularly labeling them “life unworthy of life” or “useless eaters” and highlighting their burden upon society.

The term “euthanasia” (literally, “good death”) usually refers to the inducement of a painless death for a chronically or terminally ill individual. In Nazi usage, however, “euthanasia” referred to the systematic killing of the institutionalized mentally and physically disabled. The secret operation was code-named T4, in reference to the street address (Tiergartenstrasse 4) of the program’s coordinating office in Berlin.

Ashes from cremated victims were taken from a common pile and placed in urns without regard for accurate labeling. One urn was sent to each victim’s family, along with a death certificate listing a fictive cause and date of death. The sudden death of thousands of institutionalized people, whose death certificates listed strangely similar causes and places of death, raised suspicions. Eventually, the Euthanasia Program became an open secret.

On August 18, 1939, the Reich Ministry of the Interior circulated a decree compelling all physicians, nurses, and midwives to report newborn infants and children under the age of three who showed signs of severe mental or physical disability. At first only infants and toddlers were incorporated in the effort, but eventually juveniles up to 17 years of age were also killed. Conservative estimates suggest that at least 5,000 physically and mentally disabled children were murdered through starvation or lethal overdose of medication.”

**

Silence becomes politicized. Since we know the murders of 19 disabled citizens in Japan stand as a heinous violation of human rights, how shall the stasis of quiet best be understood? Could it be as simple as this: that to acknowledge the horror would mean, necessarily acknowledging the terror of crippled refugees; of beggars crawling; of homeless veterans whose wheelchairs have broken down; of the desperate wounded in Gaza? Is it the case that the particulars of human rights are too challenging for journalism in these times?

Disability and the Hot Box

I was born on March 29, 1955: two weeks before the polio vaccine was announced. I had fourteen days of polio-potential though I spent them in an incubator since I was a premature infant. The heated box alone wouldn’t have spared me from the polio virus for that’s the thing about viruses–they move wherever human beings go. Still I was about as safe as a newborn could be. Meanwhile I was two months under incubation and this cost me my eyesight as back then it was believed adding oxygen to a preemie’s environment increased his or her chances of survival. What they didn’t know was developing retinas would be damaged by the procedure. I think of my box as a zero sum basal tech object–I’m alive because it existed; blind owing to its flaws.

In the disability rights community we speak of disablement as a social construct. We’re right to do this: physical difference shouldn’t be a matter of reduced expectations. We also talk about “the medical model” of disability which holds the disabled must be cured to be successful. Of course neither is true. Meanwhile I find myself thinking of that ur-box, my hot, oxygen rich see-through micro-world.

**

Premature infants often have serious breathing difficulties. In the 1950’s adding oxygen seemed just the thing. Babies were transformed from cyanotic blue to healthy pink. An article at the University of Pennsylvania’s School of Nursing describes the twists of the matter:

“During the 1950’s, as smaller and more premature babies were saved with increasingly technological treatments and the intensive care of these infants expanded across the country, several problems surfaced. Oxygen, the miracle cure for the respiratory distress associated with prematurity, did save many lives. However, its unregulated use in higher doses and for prolonged periods appeared to be detrimental to some babies. In 1942, the American Journal of Ophthalmology published an article about an apparently new condition, retrolental fibroplasia, or RLF.[26] By 1950, this disorder of the retinal vasculature became the leading cause of blindness among children in the U.S. By 1956, it became the first acknowledged complication of the treatment of prematurity.”

What can I say? The little box has haunted me during this pandemic. I’ve had pneumonia several times which is another complication of prematurity. Notice the opacity of the above passage–“several problems surfaced”; “appeared to be detrimental to some babies”; I’m not sure how to phrase it, but a primary principle of design justice tells us when we’re building things our job is “to sustain, heal, and empower our communities, as well as to seek liberation from exploitative and oppressive systems.”

As a blind preemie survivor I’ve not been sustained, empowererd or liberated from the outcomes of incubation. But you see I’m lucky to be here, and this I acknowledge.

**

When Jonas Salk’s vaccine was announced bells rang all across the United States. When oxygen was revealed to be a primary cause of infant blindness the information was held in secret for four years while the ophthalmology community fought over who was in charge of the studies. In a very real sense my blindness, occurring when it did, was the product of academic indifference tricked out as a pissing contest. As a kid I didn’t know why blindness was in my life or who had put it there or even what to think about it. Culture took care of the rest. I was genuinely deficient, a problem wherever I went. All disabled know this. It’s not my story at all.

**

“French physicians introduced the closed infant incubator in the 1880s in response to governmental mandates to decrease the overall dismal French infant mortality rate. (Politicians feared the lack of sufficient soldiers for future wars).[1] In Europe, displays of premature infants in their incubators began appearing in the late nineteenth century at national fairs and exhibitions. Dr. Martin Couney brought the shows to the United States in the late 1890s, and they continued until the 1940s.[2] The small size of the infants, their placement in a machine similar to those used on farms for poultry incubation, and the encouragement of carnival style barkers stimulated the interest of the fair-going public. [3]”

I was born fifteen years after the last premature infant carnival show. By the time of my incubation my brand of blindness was referred to as an epidemic.

It’s terrible to contemplate how tightly my blind life fits into a narrative of both exploitation and experiment. The latter reflects “how” oxygenation as the cause of incubator vision loss was confirmed–namely in a famous experiment two groups of premature infants were studied, one receiving oxygen and one going without. It was proved that the oxygen caused blindness.
I promise you there’s no headline that says: “Kids go blind to prove a point!” I also promise there’s no headline saying: “Kids denied oxygen expire to prove a point.”

**

The history of disability struggles with utilitarianism, Nazi doctors, newfangled technologies and the prospect of human experimentation “tricked out” to resemble good research. From CRSPR-Cas9 gene editing technologies to bioinformatics and health care data sets there is no area of contemporary disability research untouched by issues of bioethics. In other words, the critical questions facing the disabled today have to do with the furtherance of disability life, the protection of the elderly and poor, and a renewed commitment to protecting the vulnerable from all depredations of life. As the late Disability Studies scholar and pioneering bioethicist Adrienne Asch wrote: “Activists from Not Dead Yet and ADAPT, as well as disability scholars from philosophy, psychology, health economics, and other disciplines, need to participate regularly in the mainstream conversation; they need to help determine criteria for allocating national resources among all the many health, disability rights, environmental, and social justice problems we face. They also need to be recruited for hospital and hospice ethics committees, and they need to train physicians, nurses, and social workers in new ways of understanding life with disability.”

Yes, we need to get out of the boxes.

Is anybody out here?

Of the assassins Shakespeare had little use except to push them around on the stage. It’s a smooth irony that a Shakespearean actor killed Abraham Lincoln. Poor Lincoln died while watching a farce. This is how I’ve awakened today—lugubrious and itchy.

**

Why write a blog and share morsel thoughts? I was a lonely child. I couldn’t see and I’d go outside and shout “Is anybody out here?” Sometimes other kids wouldn’t answer. Why play with the blind kid—he just ruins the baseball game?

Is anybody out here?

**

Once when I was in graduate school in Iowa City I was so lonesome I turned the lights on and off repeatedly in my apartment. Maybe space aliens would come?

**

On the campus of Syracuse University there’s a wonderful statue of Abraham Lincoln riding a horse and reading a book at the same time. His horse knows where to go. I love that statue more than I can say.

**

CW/he’s getting grumpy now…

The poetry will heal you school thinks that the body is a thing to be overcome. It views the head as a lifeboat from disablement. Poetry is supposed to fix you up, and damn, here comes one of those crippled poets to mess it all up!

**

Without David Hume, no Thomas Jefferson. Without Jefferson, no Lincoln.

Early this morning a crow asked me his untranslatable question.

I think the crow is a fast learner and I’m a slow one.

Of slow learning vs. fast the disabled know much. I still remember with considerable pain the professor who told me that because I’m blind I shouldn’t be in his class. Why? Because I needed extra time to read. What is that?

Davie Hume:

“When it is asked, whether a quick or a slow apprehension be most valuable? Whether one, that, at first view, penetrates far into a subject, but can perform nothing upon study; or a contrary character, which must work out everything by dint of application? Whether a clear head or a copious invention? Whether a profound genius or a sure judgement? In short, what character, or peculiar turn of understanding, is more excellent than another? It is evident, that we can answer none of these questions, without considering which of those qualities capacitates a man best for the world, and carries him farthest in any undertaking.”

Excerpt From: “An Enquiry Concerning the Principles of Morals.”

And that should be the question: “what will carry us the farthest?”

I know that’s what the crow was talking about.

Don’t you just love natural philosophy?

**

Yes, Chopin, piano, but it’s his violin I’m interested in. Such softness. And hope. Did I give up on hope? The violin says I was in danger of it.

I’ve had poor training in hope. Oh I’ve had lots of ideas. I studied poetry writing and ideas were all about. For instance I used to think if you just got in touch with the unconscious everything would be set right. That was New Age utopianism and I didn’t question it. I thought surrealism would save us. It never occurred to me that this wasn’t necessarily a hopeful idea.

The only untrue thing Emily Dickinson ever wrote was that hope is the thing with feathers. It is the violin. Birds or angels are no match for the violin.

**

Last night I prayed as I lay down. I asked to be made kinder and stronger. I am aware this isn’t hip.

Strictly speaking I’m not hip. When I was very young I thought the postman was the coolest person alive. Wanting to be like him I walked up and down our rural street ringing doorbells and handout out old copies of the New York Times.

M. Leona Godin’s “There Plant Eyes”: A Bold New Assessment of Cultural Blindness

I’ve been trying for many years (without much success) to think about blindness as a dynamic of imaginative insufficiency. My rhetorical tools have been limited culled as they are from a slumgullion of literature and history with some personal discomfiture tossed in. If you’re blind and you want to write about it you face several obstacles. First, no two blind people are alike. Second, blindness as it’s generally understood is a construction made by sighted people. (Think of Blackness as a white invention with all its horrors.) Thirdly there’s the compensatory and sentimental bullshit that accrues from category two. If the sighted fear us then they’ll always metaphorize us with their bifurcated Victorian view: sightedness is sophisticated and artful; blindness is despair, dread, and primitivism; blindness is a no name nothingness, a “Nemo” without volition. And if this is true, then lack of sight must also be rage. (Think of the blinded Cyclops throwing boulders.) And last but not least there’s juridical blindness, putting out the eyes of thieves, the blindness of Oedipus who wanders the countryside advertising his wanton dishonesty. From this we get the notion blind beggars are sinister. Blind Pew. Now throw in a few blind-compensations, blind Homer, blind Milton, blind seers who have occult powers and you’ve got the waterfront.

Enter a welcome and sophisticated literary and cultural study by the blind scholar and memoirist Leona Godin entitled “There Plant Eyes.” If writing about blindness is complicated (and it surely is) she has the deft touch of reason necessary to take on what I’ve long imagined as the “sighted theocracy” of ophtho-centrism. Don’t kid yourselves, the sighted “do” set our notions of blindness. “There Plant Eyes” calls this out. Godin urges blindness forward in several refreshing ways.

Reader’s note: my own work as a poet and memoirist is quoted in some lively passages, as well as work by many distinguished contemporary blind writers including Georgina Kleege who’s book “Sight Unseen” remains a classic study of blindness and culture.
Refreshing–back to refreshing–Godin dispels the tiresome and hoary sighted idea that blindness is like living inside a tree. She writes in a chapter on Milton (where she quotes me on my own first meeting with the blind poet):

“Yet you may be wondering about those born completely blind, or who went blind so early in life that no memories remain of having been sighted: Surely they live in a dark world? I will let the philosopher Martin Milligan, who lost his eyes to cancer when he was eighteen months old, answer: “Perhaps it’s just worth dwelling for a moment on the word ‘darkness,’ to emphasize that for blind-from-birth people and people like me this word doesn’t have any direct experiential significance. We don’t live, as is sometimes supposed, in a ‘world of darkness,’ because, not knowing directly from our own experience anything about light, we don’t have any direct experience of darkness.”

One may say, just as we understand there’s no true green in nature, so it is with darkness. Perhaps, freeing blindness from its cheap associations with death we might begin to fully live? Imagine! Apologies perhaps to John Lennon.

A favorite passage of mine concerns Godin’s analysis of sighted people’s inability to describe what they see–a pet peeve of mine. This is memorable:

“Sighted people don’t use their eyes nearly as well as they believe they do, and even more than that, they do not use their vocabulary. I believe that the speechless aspect of dealing with a curious blind person has much to do with the fact that so many sighted people take it for granted that a picture speaks a thousand words. Well, maybe they should start attempting to use their words to describe the visual and realize that they can’t. The frustration that sighted friends show when they are asked to put alternative text on their social-media images testifies to that. It’s an impoverishment of education that, if rectified, could go a long way in translating those so-called valuable pictures into complex problems of language and thought.”

Yes indeed. The impoverishment of education described above also translates to the “sighted” employing blindness as a metaphor for their own failings.

This is not, however, a rebarbative or tempestuous book. It’s a tonic if you will.

I’m looking forward to speaking online with Leona Godin and several distinguished blind folks “online” via Zoom this coming Saturday. Check out the link here:

Cancel This…

“You will do me the justice to remember, that I have always strenuously supported the Right of every Man to his own opinion, however different that opinion might be to mine. He who denies to another this right, makes a slave of himself to his present opinion, because he precludes himself the right of changing it.
The most formidable weapon against errors of every kind is Reason. I have never used any other, and I trust I never shall.”

–Thomas Paine “Rights of Man”

It’s easy to forget the revisionism and deceit that often follows a great writer’s death. Raymond Williams’ endless calumnies against George Orwell, falsely accusing him of selling out the left to the British police state is a classic example. When Trump cries “fake news” its
best to remember academics helped launch it.

Poor Orwell. Who never belonged at any dinner table.

Gore Vidal: “politics is knowing who’s paying for your lunch.”

No one ever paid for Orwell’s lunch.

Orwell: “If you hate violence and don’t believe in politics, the only major remedy remaining is education. Perhaps society is past praying for, but there is always hope for the individual human being, if you can catch him young enough.”

There is always hope for the individual human being.

Orwell:

“When recently I protested in print against the Marxist dialect which makes use of phrases like “objectively counter-revolutionary left-deviationism” or “drastic liquidation of petty-bourgeois elements,” I received indignant letters from lifelong Socialists who told me that I was “insulting the language of the proletariat.” In rather the same spirit, Professor Harold Laski devotes a long passage in his last book, Faith, Reason and Civilisation, to an attack on Mr. T. S. Eliot, whom he accuses of “writing only for a few.” Now Eliot, as it happens, is one of the few writers of our time who have tried seriously to write English as it is spoken”

Beware of writers who sniff loudly that so and so is “too accessible” and further beware of those who proclaim with rococo jargon they’re speaking for the proles.

Orwell:

“…let me repeat what I said at the beginning of this essay: that in England the immediate enemies of truthfulness, and hence of freedom of thought, are the Press lords, the film magnates, and the bureaucrats, but that on a long view the weakening of the desire for liberty among the intellectuals themselves is the most serious symptom of all. ”

This shivers me. Always has. “Cancel culture” is a symptom of a weakening desire for liberty and is rather a desire only for power over the ideas of others.

The day is overtly forgiving…

I remember a famous poet asking his audience if they believed the earth has consciousness. No one raised a hand. I was a teenager and too shy. I knew the earth was smart. After this I resolved to speak up no matter the occasion.

**

“Now” is an advertisement so false even pineal glands know it. “Now” is the most favored word in capitalism. Worse of course is the expression “now and then” which is a stricture on tomorrow, governed by nothing since “now” has little predictive value.

“Right now,” say the tyrants, “things couldn’t be any better.” “Now” says global warming isn’t real. “Now” says the poor are imprisoned and they’re meant to be. “Now” in America is shorthand for “there isn’t any future unless you’re already in the “now” club.” We used to say salubrious persons are “in the know” but, well, you get my drift.

**

In disability circles there’s no future planned beyond this: your tomorrows are being erased in the halls of Congress. After health care and social security are gutted will they bring back the ugly laws? Will they lock up the disabled in ruined shopping malls?

**

This morning I found myself thinking of Aristophanes who I read assiduously in college. Here he is:

“Look at the orators in our republics; as long as they are poor, both state and people can only praise their uprightness; but once they are fattened on the public funds, they conceive a hatred for justice, plan intrigues against the people and attack the democracy.”

**

Now wants what it has to remain always. The plan is to take down future democracy always.

**

Sit for a time in the Agora thinking of Aristotle’s wrists. I believe he looked at them before he spoke. My favorite bird is the Phoebe. I like Miss Dickinson. I’m fond of the late Finnish poet Pentti Saarikoski. He imagined snakes cleaning his ears. Some poets love the snake properly. I like to spread my ten fingers across my face. “Not only is the Universe stranger than we think, it is stranger than we can think.” (Werner Heisenberg) Don’t give up. Keep moving. Even in a small dark room.

And speak.

Il Penseroso

Day breaks and the moon still hangs.

There’s a moon in my wrist and one in my eye.

I wish I could call you father. 

O the moon has run away.

See how small the houses are?

And bring all Heav’n before mine eyes. 

And may at last my weary age 

Find out the peaceful hermitage, 

Day…O father…