Planet of the Blind

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.

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.

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:

“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.

Peaches ripened without any help
My nature is not “of” the state

I cannot play any kind of horn
My Heaven has something to do with Mozart

You can’t win by haunting others
My mirror sweeps the empty room

One day I’ll be light on my feet

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.

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…

Well there it goes, my old fancy. I loved loving you.
Goodbye happy childhood sneakers. (P.F. Flyers)
Sayonara transistor radio with your “top forty” (you got me through the 7th grade when bullies pushed me down the stairs because I was blind.)
Toodle loo bell bottomed polyester lime colored jeans from the tenth grade that, you guessed it, got me pushed down stairs for being blind and fashion clueless.
Get the Hell Out “Catcher in the Rye” as I never liked you. Holden Caulfield is a dick.
Write if You Get Work, you ableist high school math teacher who made fun of my crossed eyes.
I could go on but won’t.
Just doing some spring cleaning.

**

When people say “Black Lives Matter” they’re affirming the goodness in Blackness. Those who bristle at the phrase (which is more than a phrase as its a cry of the heart) are asserting in no uncertain terms that oppressed people can’t proclaim “the good” for the word doesn’t belong to them. “All Lives Matter” means white people get to imagine goodness so Black people won’t have to bother anymore. Just so, the disabled say our lives are not second rate. We ask “where did you get that idea and why is it so important for you to cling to it?”

**

I’m power washing the radar forest of moldy abstractions.

**

Meanwhile:

What is it about being alone in a strange hotel that drives me always to think of my dead twin brother? He died shortly after we were born. I did not know him. Yet always in places of loneliness he seems to be with me as he was, early morning, before sunup in the Sheraton in Frankfurt, Germany. Was I tired? Did this make me sentimental? Did I have Madame Blavatsky on the brain? Is he always with me? Will genetic research prove it? Am I really living for two? I had wild dreams and woke and felt him. It’s a sensation known to everyone I think—that your private dead are there when you weren’t especially thinking of them. Even in a sterile, megalithic business hotel there was a mysterious and unanticipated shiver and I wondered how many other rumpled travelers were with me.

**

We speak as though fear and certainty are co-determined. Goodbye to that also.

I’ve been lucky to have had good friendships. I say lucky because I’m not an easy person to know. I’m opinionated, contrarian, suspicious of cant, disposed to a generalized distrust of earnestness. I don’t believe in “theory” when applied to literature or culture. Literary “theory” is opinion that hasn’t been subjected to serious rhetorical analysis. Derrida on animals is not worth the read. As I say, I’m not easy to know. I suspect I’d have gotten along well with the late Neil Postman.

When I was 15 and staying at a Key Biscayne resort with my father (who was on a business trip) I found myself alone in an elevator with Melvin Laird, Nixon’s secretary of defense. The year was 1970. My hero was John Lennon. I looked at Mel and said, “How’s your war going Mr. Laird? Are the body counts where you’d like them?” I was anorexic, stringy haired, and rebarbative. He glared and bolted when the doors opened.

I’m not easy to like. Unless you’re against war, dislike social hypocrisy and all the “isms” as we say.

But then again I like those who have learned to like themselves.

Which means knowing also who you are not.

Which means knowing what Bob Marley meant when he said:

“The truth is, everyone is going to hurt you. You just got to find the ones worth suffering for.”