Helen Keller startled vaudeville audiences from 1920 to 1924 with her lefty politics. According to Dorothy Herrmann’s biography, Keller’s answers to current events questions from the audience such as “What do you think of President Harding?” had planned zingers such as “I have a fellow feeling for him. He seems as blind as I am.” For my title, I take the liberty of substituting Trump for Harding, who was arguably one of our worst presidents, although he was popular at the time–his corruption being not fully revealed until after his mid-term death.
When Keller and I use “blind” to describe a man undeserving of power and ignorant of the common good–Trump or Harding–we mean, “I’d rather have no sight than no sense.”
Because Keller named, according to Herrmann, Eugene Debs (who ran for president on the Socialist Party ticket five times) as her “favorite hero in real life,” I feel confident in saying she would have supported Bernie Sanders, but, as a suffragette, I believe she would have rallied behind Hillary Clinton, and I think it’s safe to assume that she would have been pretty freaked out by the idea of Trump running, let alone winning, the presidency.
Besides the fact that she was one of the founding members of the NAACP, and an advocate for people with disabilities, she was very outspoken about workers’ rights and often linked the blind greed of capitalism to the ills of the common man.
“Amazing that hands which produce nothing should be exalted and jeweled with authority!” she writes in the first essay in her 1913 collection Out of the Dark, and continues:
“Is it not unjust that the hands of the world are not subject to the will of the workers, but are driven by the blind force of Necessity to obey the will of the few? And who are these few? They are themselves the slaves of the Market and the victims of Necessity.”
I would argue that Trumps blindness, and the blindness he infects others with, is fundamentally a capitalist one. He is unable to see beyond his own needs and accomplishments. In other words, his point of view is restricted by ego and greed, which leads him to outrageous and offensive statements.
During his debacle with the Khan family, Trump was accused of sacrificing “nothing and no one,” to which he responded ludicrously, “I think I’ve made a lot of sacrifices. I work very, very hard. I’ve created thousands and thousands of jobs, tens of thousands of jobs, built great structures. I’ve had tremendous success. I think I’ve done a lot.”
This stubborn assertion that working hard to line one’s own coffers is somehow equivalent to sacrifice, exemplifies his unwillingness or inability to see beyond himself. When he says avoiding paying taxes is “smart,” I believe he knows he’s being caddy and playing to the soundbite hungry, but when he, seemingly in all earnestness, confuses “building great structures” with sacrificing one’s life or losing one’s child, we are looking at a very profound blindness indeed.
*A draft of this essay was originally written in October 2016, before the election. It was never published. The recent horror in Nevada caused me to dig up all my old Trump writings. I offer it as #27 of #52essays2017. For more Trump fun, read my essay on Machiavelli HERE*
*Recently Artsy reached out and reminded me of this article (written last August) and the importance of art accessibility. Also, I should note that things are continually improving, as exemplified by my friend Claire Kearney-Volpe who offered a Co-Lab through the NYU Accessibility Project, to help Cooper Hewitt bring art accessibility to their design museum*
“You can’t touch the artifact!” said a female voice in an urgent museum whisper. In fact we’d been directed to the pieces in The Met’s Egyptian collection that are touchable by blind patrons by another museum guard, who clearly had great love of his job generally, and this aspect of it in particular. He shushed his alarmed colleague and explained to her about art accessibility. You’d think all the guards working the Egyptian wing would be informed of this unique aspect, or at least that they would have looked at the exhibits they were guarding over and learned what the signs clearly state, but people don’t read.
My boyfriend Alabaster told me that several people stood staring aghast during the course of our tour, and that one woman nearly screamed when she saw me with my hands on a sarcophagus until her husband pointed out the braille title card and the printed sign explaining that the object may be touched by BLIND PATRONS ONLY to enhance their museum experience.
You may be jealous and confused, but don’t be! Out of the approximately 26,000 artifacts in the Egyptian collection, only a handful may be touched. The rest must be explained verbally, which is just not the same thing.
I have been on several “sense” tours at NYC museums over the years and, while I appreciate the impulse, it often feels like they are phoning them in in order to check the accessibility box. Take for example a sense tour at The Met wherein our tour guide described almost every object as “very colorful.” Or the time at MOMA, when, at the top of a tour of Soundings, an exhibit of contemporary sound art–perfect for blind people right?–we found ourselves sitting on portable stools in front of a silent piece–the only silent piece of the exhibit–with a tour guide who, in an effort to encourage us to commune with the art, sat on the floor with her back to us and began to meditate.
I haven’t a very long fuse for the unbearable and soon I was fuming, not the least because I could hear the happy buzzing and whirring and chattering of a dozen or so other pieces–and as you may have noticed I like soundscapes a lot! Still, I felt somehow guilty for not appreciating the effort, so instead of having a tantrum, I handed my headset to the tour coordinator, claiming a terrible back spasm, and Alabaster and I got out of there to enjoy the museum in our own way.
He described in great detail some of his favorites–Paul Klee and Piet Mondrian –and I was able to ask questions when I didn’t understand. Even though I used to see and can readily access visual memories, I find it difficult to assemble descriptions into an art object visible to my mind’s eye. But, with great effort, enthusiasm and empathy on the side of the describer, and intense and artistic concentration on the side of the listener, it can happen that a heretofore-unseen object can manifest in the mind’s eye and occupy mental space as vividly as any object once-seen. As with all translations, this one is not perfect but it is wonderful.
Friends of ours with a similar dynamic–Caroline (visually impaired) and David (sighted)–went to Paris and were delighted to find that all museums were free for blind people. It made so much sense that this should be the case, since, really to get anything out of the museum experience, only a few objects can be described and integrated at a given visit. There are no cursory glances for blind people. All must be savored and chewed slowly if it’s to make any impact, and so what might take a sighted museum-goer a single trip to see, could take several for a blind person and her trusty describer.
Back in the states, it never hurts to ask about art accessibility. At the Whitney, we were pleasantly surprised when, upon asking if there’s a discount for blind patrons, we received the good news that it would be free for me–whether this was policy or not was unclear, but it was nonetheless welcome and, in addition to having a fine time talking through the art, with many articulate gestures on the one hand and far-flung questions and analogies on the other, we apparently attracted attention. More than once, Alabaster caught strangers filming or photographing us.
Which brings us back to our Met tour on Saturday in which I was able to touch Ancient Egypt. It was really cool to feel the mane of the lion goddess, and squeeze the nose of a king’s sarcophagus, but my favorite part of the tour, and the reason it far surpassed the tour the Met organized a couple years back of the very same objects, was spending time reading the hieroglyphs with the help of our personal Egyptologist (and voiceover artist extraordinaire), Lloyd Floyd.
Before we learned which artifacts I could touch, we started the tour at a colossus where Lloyd Floyd described the pharaoh’s many titles, spelled out in hieroglyphs, and I found it difficult to concentrate, but later, with my hands on the hieroglyphs, the meanings that he explained corresponded to a sense impression–just as you, my dear sighted reader, may take information in through your sense of sight while listening to information regarding that description.
I realized how incredibly enlightening it was to hear what the signs meant when I was not splitting my brains trying to keep the image just described in my head at the same time as incorporating information about the object described. In other words, incorporating two abstract concepts into my poor pickled brain at the same time is exponentially harder than incorporating one abstract and one concrete–or in this case granite!
That’s not to say that, as mentioned above, it is not wonderful to receive a description of an art object, but it takes a long time, and when the description of what is seen comes at you alongside esoteric context, the brain easily boggles! However, with my hand on the hieroglyph my ear became very attentive. Besides, feeling the shapes and being able to participate in the discussion of whether the thing under my fingers, and their gaze, represented, as the archaeologists claim, a horned viper or, as our senses suggested, a slug, was a precious moment, not to be underestimated.
Not all museum pieces are made of virtually indestructible granite, but there are other ways of creating environments of art accessibility. Through models and replicas and many other ingenious tactile analogies as described in an article at Art Beyond Sight. Mentioned in that article is a brief warning to be careful not to make the experiences segregated:
“Some museums offer visitors in-depth tactile investigation of selected works, frequently in an alternate space. It is crucial that this not become a “segregated” program, but rather a supplementary educational approach to gallery programming.”
I agree with this, and believe the experience of others to my even being in a museum makes the whole experience educational in a multi-faceted and fun way–nothing like freaking out sighted people on a Saturday afternoon at The Met!
When I started my grad degree at NYU, I was given, for my nearly exclusive use, a little padded cell in the basement of Bobst Library where, in the beginning, I read books on the history of the education of the blind alongside postmodern theorists. It was black, or I remember it as such because of the black acoustic foam on the walls. The room was insulated in order to keep the electronic voices from seeping out into the quiet library. It was the A Level below the main floor and it, along with the B Level was open twenty-four hours a day, excepting holidays. This meant that studious NYUers could enter any time of the day or night.
These were the days before the several students launched themselves off the balcony, perhaps hypnotized by the interlocking pattern of colored marble on the main floor. I know that on the occasions I was up there looking down, I felt drawn, and could easily imagine the invitation, the siren song of putting an end to the interminable expectations of youth. While I was still at NYU, the gates went up on the stairways and around the balconies to keep this from happening.
As I walked across that shiny expanse that reminded me of a ballroom, I usually looked up not down. Although I thought how wonderful it would be to study up there in the light-filled spaces of the upper floors, my reading equipment was below ground. And so usually, I walked across the expanse to the bank of elevators that opened near my little room with its keypad code entrance just for the visually impaired and blind students of NYU.
If I looked left on my walk to the elevators, I saw the circulation desk and, in the first couple years I was there anyway, the card catalogue to the right. Later those very particular looking chests of pullout drawers with their little cards that held thousands of books–inaccessible to me since I was a very young teenager were replaced with a museum-style exhibition area with pointed lighting. No one would be using those cards anymore; every book would be catalogued online and accessible forever more, thank god.
The times I rode the elevator up instead of down, it was with my reader. We would hit the card catalogue and then troop around collecting my books. He would read some of those books to me–an intimate experience that deserves its own essay–but many of the books, especially those I planned to read from cover to cover and that boasted clear print, would get taken down to my little black padded cell to be scanned by an enormous stand-alone electronic reader called a Kurzweil. Today my Kurzweil software is in my laptop and I often use it to download books or occasionally to scan them on a portable scanner that is about the same size as my laptop, and it does a great job–big improvements in OCR over the past twenty years!
I kept a little pile of books in a plastic bag under the desk in my padded cell, and once, after a night out with friends–those were the days before guide dogs and white canes when I still looked normal and could mostly travel freely–I entered and scanned a book on the history of the education of the blind. I read drunkenly and while eating my bodega bagel, about Valentin Haüy’s dramatic discovery of ten blind performers, an account that always stands at the origin of the education of the blind.
Stumbling into a not-very classy entertainment venue in eighteenth-century Paris inspired Haüy to begin his path that would eventually lead him to found the first school for the blind. The scene of the blind men, gussied up and banging their broken instruments delighted the crowd. It may have been the Age of Enlightenment for the philosophes, but the rabble wanted their lowbrow fun! Here’s a representative version found in Journey into Light: The Story of the Education of the Blind (1951:
“Valentin Haüy was strolling through the streets of Paris one autumn day in 1771, some years before his meeting with Maria von Paradis, when a crowd hooting and laughing in front of St. Ovide’s Cafe on the Place Louis-le-Grand-today the Place Vendome-drew his attention. This grave young scholar crossed the cobbles to see what amused the shrill-voiced women in ruffled panniers, the rowdy men in tricorn hats, coarse yellow cloth coats, black breeches and copper-buckled shoes.
“He stared incredulously at the mummery being enacted on a platform raised above the cafe tables. Ten blind men scraped their bows in pantomime, drawing shattering discord from violins, cellos, basses and viols. They stared blankly at sheet music turned on the racks so that the notes were visible to the jeering audience. Their sightless eyes were ringed with huge pasteboard spectacles devoid of glass. They wore grotesque robes, with dunces’ caps and asses’ ears. A Midas headdress distinguished their leader. A peacock tail unfurled was the backdrop for his operations.
“Lighted candles cast shadows on their weary faces and gave raw emphasis to their infirmity. … Every day for two months they had scraped, fiddled and kept up a monotonous accompanying chant, while their audience jeered, banged tankards on the tables and screeched bawdy jokes. Now and again a drunken couple rose and danced in the street to the fantastic music. The rowdies who gathered at night stormed the blind men’s platform and would have demolished it in their exuberance but for a cordon of guards called in to keep order.
“Already the place was being renamed the Cafe des Aveugles [Café of the Blind]. Prints advertising the curious show were sold by M. Mondhar on the Rue St. Jacques, with a sketch of the scene, an announcement, and some misspelled doggerel verse.”
This extraordinary scene is woven into the origin story of the education of the blind, and it continues to haunt me because, after twenty years, I still doubt I’ll ever be able to shrug the moment off as being alarming, inexhaustible fodder for art. Here’s the first piece I ever wrote for The Spectator & the Blind Man, first published as flash fiction at Danse Macabre.
When the first fat coin smacked my face, I had to admit Monsieur might have been right about his strange money making venture. Of course that wasn’t my first thought. My first thought was, “Ow, what the hell?” And my second thought was, “Shit! Where’d it go?” I wanted to look for it, but I thought that if Monsieur saw me groping around in the dirt for it, he’d be on my ass yelling, “Get back to your banging and scraping blind man!”
The scoundrel had got us to agree to divide The take fifty-fifty, i.e., He would get half and the ten of us would have to split the rest. So I bet you’re thinking, “Well now, doesn’t that sound fair.” And of course we recognized the bamboozle. After all, we’d be doing all the work, making asses of ourselves etc. But here’s the thing: it was his idea. I mean, how could we have known you people would be so easily entertained? The sighted have very strange taste!
Monsieur had also got us our costumes and instruments, such as they were. But he hadn’t warned us about coins being flung at our faces, so after the coin bounced off my face and into the dirt, I decided to do a subtle reconnaissance. It was a delicate operation considering the fact that I was supposed to be playing the fiddle with the stick or whatever it’s called, and all that scraping and banging and yelling and clapping made it pretty difficult to concentrate on the business of my big toe.
Now, I don’t want to give the impression that I’m used to a tranquil or meditative lifestyle. I mean, I live with three hundred blind people who are constantly bashing around and messing with each other. It’s not the Paris madhouse, but it sure can get crazy in here! Still, you cannot imagine how damn loud it was at the Saint-Ovide Fair that night. There must have been a thousand people greedily imbibing our blind buffoonery!
Anyway, while my big toe was still looking around for my coin, I heard Jacques (who was next to me), go “Oof!” I guessed that he’d been hit with a coin of his own.
Then I realized he was crawling around in the dirt for it. “Holy horse manure!” I said to myself, “So much for subtlety. That guy’s as subtle as an elephant in a tutu. As subtle as that skinny, syphilitic whore with the oozing boob who calls herself Jubilee. As subtle as the paper spectacles rimming my blind eyes and the dunce cap with ass’s ears sitting on my head. As subtle as Denis, who suddenly starts braying like an ass! Seriously? Does he think he’s singing? Amazing. The stupid crowd is eating it up. This is war!”
I was not about to be outdone by that clown, so I wagged my head a little and trotted in place like a dancing donkey. It worked! People banged their tankards and cheered. Encouraged, I wagged more vigorously and trotted with gusto, and yep, brayed out some bits of song too.
All of a sudden the coins came fast and furious, too many to count. For a few exhilarating moments I felt like I had found my calling. I would be an entertainer. Make a ton of money. Delusions of grandeur, as ridiculous as any of Jacques’s, who always comes home from a day’s begging, convinced that the grand lady who’d tossed him a penny would certainly adopt him as her blind pet project.
I don’t indulge in that kind of bullshit, and I’ll tell you why. Because just when you think you might be able to do something other than live with a bunch of disgusting blind guys who are so horny they rub against anything that breathes, and smell like piss and moldy cheese twenty four seven, just when you think you might be able to get a taste of some other life, that other life jumps up, smacks you on the forehead, and says, “Get real blind man. You will never amount to anything.”
Case in point: The coins were flying, high velocity, dropping all around. Excited and reckless, I bent over to do, I don’t know, some kind of spastic crouching jogging thing, and slammed my eyeball, such as it was, into the corner of the music stand in front of me.
The music stands had been set up in front of each of us with their sheets of music facing the spectators. Nice comic touch, eh? But I’d forgotten it was there. Being blind is so marvelous.
Anyway, it really hurt. Started gushing. People laughed. But I couldn’t keep up the dancing donkey routine anymore. Besides, now all the guys were dancing. They’d realized it was solid gold. I heard later that Monsieur wanted more dancing as the crowd loved it, but by then I was feeling quite miserable, to say the least.
My mangled eyeball got infected, of course, and for the next six weeks I lay on my cot, certain I was dying. To add to my misery, the guys came back every night from the “Café of the Blind,” as it had been dubbed in our honor, with full pockets, whores, and massively inflated egos. They thought they were made, but I knew it wouldn’t last. And I was right.
After a month the crowds lost interest. Monsieur said thanks but he wouldn’t be needing their services anymore. He told them to run along back to their pathetic lives. (Our pathetic lives.) But at least they got that month. All I got was this stupid empty eye socket.
Thinking back to where The Spectator & the Blind Man all started–and by all I mean dissertation, stage production, literary endeavor–it was probably with Diderot. And I believe I discovered Diderot in the pages of Derrida:
“I write without seeing….. This is the first time I have ever written in the dark . . . not knowing whether I am indeed forming letters. Wherever there will be nothing, read that I love you.”
-Diderot, Letter to Sophie Volland, June 10, 1759
I first encountered this quote in a book called Memoirs of the Blind, a perhaps ironically beautifully visual book about blindness and the self-portrait by Jacques Derrida, written for an exhibition that he curated at the Louvre.
Denis Diderot, one of my all-time favorite dead white guy writers, would definitely be at my fantasy dinner table for witty repartee and bon vivantism. As I’ve now surely quoted a million times and cannot even remember where I originally read it, he died reaching for the cherry compote (the dessert), that is, he died wanting more of the good stuff.
But even before that great endeavor of promoting equality, an endeavor that often seems to sing the early song of revolution, Diderot was a young man with man of letters stars in his eyes and he wrote a book inspired by the thoughts of the great Voltaire and other early luminaries of what would come to be known as the Siècle de Lumière. The Age of Enlightenment is much maligned in certain circles for its idealization of rationalism and all the woes of modernity, but Diderot (as our opening quote suggests) reveled in the dark and unfathomable parts of humankind.
Diderot’s Letter on the Blind for the Use of Those Who See (1749) suggested, among other things the doubtfulness of God (Diderot dabbled in deism), and put his controversial notions into the mouth of a real life person, an English mathematician named Nicholas Saunderson, who inherited the Lucasian Chair from none other than Newton, but not his quirky but nonetheless strident beliefs. Saunderson was famously irreligious, but the deathbed conversation Diderot puts in his mouth–not to mention the glorious prophecy of Darwin’s theory of evolution–was indeed fabricated.
Here’s a little sample of the offensive dialogue:
”Consider, Mr. Holmes,” he added, “what a confidence I must have in your word and in Newton’s. Though I see nothing, I admit there is in everything an admirable design and order. I hope you will not demand more. I take your word for the present state of the universe, and in return keep the liberty of thinking as I please on its ancient and primitive state, with relation to which you are as blind as myself. Here you will have no witnesses to confront me with, and your eyes are quite useless. Think, if you choose, that the design which strikes you so powerfully has always subsisted, but allow me my own contrary opinion, and allow me to believe that if we went back to the origin of things and scenes and perceived matter in motion and the evolution from chaos, we should meet with a number of shapeless creatures, instead of a few creatures highly organized. I make no criticism on the present state of things, but I can ask you some questions as to the past. For instance, I may ask you and Leibniz and Clarke and Newton, who told you that in the first instances of the formation of animals some were not headless and others footless? I might affirm that such an one had no stomach, another no intestines, that some which seemed to deserve a long duration from their possession of a stomach, palate, and teeth came to an end owing to some defect in the heart or lungs; that monsters mutually destroyed one another; that all the defective combinations of matter disappeared, and that those only survived whose mechanism was not defective in any important particular and who were able to support and perpetuate themselves.
” Suppose the first man had his larynx closed, or had lacked suitable food, or had been defective in the organs of generation, or had failed to find a mate, or had propagated in another species, what then, Mr. Holmes, would have been the fate of the human race? It would have been still merged in the general depuration of the universe, and that proud being who calls himself man, dissolved and dispersed among the molecules of matter, would have remained perhaps forever hidden among the number of mere possibilities. If shapeless creatures had never existed, you would not fail to assert that none will ever appear, and that I am throwing myself headlong into chimerical fancies, but the order is not even now so perfect as to exclude the occasional appearance of monstrosities.” Then, turning towards the clergyman, he added, “Look at me, Mr. Holmes. I have no eyes. What have we done, you and I, to God, that one of us has this organ while the other has not?”
So this, along with his bawdy yet still philosophical tale The Indiscrete Jewels–about a prince who gets his hands on a ring which, when turned upon the nether regions of ladies, gets them to talk, indiscreetly about their escapades–published around the same time, landed Denis Diderot in the dungeon of Vincennes, which is where we find him in the following piece. My literary offering is the first in The Spectator & the Blind Man series.
Diderot, a lover of women, music, the theatre and all that Paris had to offer did not relish his time in prison and, in order to avoid a future return, did not publish his literary works, such as Jacques the Fatalist and d’Alembert’s Dream, for which he is mostly known today. In other words, Diderot may have helped to sow the seeds of the Revolution, but, after Vincennes, he mostly avoided angering the regime by keeping his potentially controversial works in private circulation. Diderot enjoyed a good long life and died just five years before the storming of the Bastille.
No. I am no Socrates, no martyr to truth. A fishmonger of truths more like. My mistake was in allowing the odors to reach royal nostrils. Henceforth, I peddle my stinking truths underground or, if they are compliant truths, I shall dress them in suitable costumes, sufficiently powdered and pinned to ingratiate themselves to this foolish and frivolous city of mine. Ah Paris! How I adore your decadence. Let me die reaching for the cherry compote!
I digress. I must tell you about last night’s dream that frightened me nearly to death, for, though you may still despise me, I wish you to understand why I scrape the dirt floor with my chin, why I will do or say or write anything they ask of me in order to be out of here. Why I will denounce, without regret, my little Letter on the Blind.
Last night I woke out of sleep into the body and mind of Saunderson. Yes, my blind mathematician whose deathbed non-confession has stirred so much ire. I awoke into his blindness and found myself confronting not only the fumbling clergyman Holmes, but also the governor who has seen fit to thrust me into this cell.
The blindness I experienced was like that of Milton’s darkness visible, a blindness not of eyes but of mind. Understand me. I felt sharp as a whip, as brilliant of intellect as Saunderson must have been to inherit the Lucasian Chair of Mathematics (a seat held by no less a luminary than Newton) but there were no longer any images, no colors, no pictures of beauty or ugliness to be found in this Diderot-head of mine. All memory of seeing had evaporated, and it was this blankness that frightened me almost to distraction. The deprivation terrified me even as I enacted the very dialogue that has landed me in prison.
As Saunderson I said, “Ah, sir, don’t talk to me of this magnificent spectacle, which it has never been my lot to enjoy. I have been condemned to spend my life in darkness, and you cite wonders quite out of my understanding, and which are only evidence for you and for those who see as you do. If you want to make me believe in God you must make me touch Him.”
“Sir,” returned the clergyman, “touch yourself, and you will recognize the Deity in the admirable mechanism of your organs.”
I countered, “All that does not appear so admirable to me as to you. But even if the animal mechanism were as perfect as you maintain, what relation is there between such mechanism and a supremely intelligent Being? If it fills you with astonishment, that is perhaps because you are accustomed to treat as miraculous everything which strikes you as beyond your own powers. I have been myself so often an object of admiration to you, that I have not a very high idea of your conception of the miraculous. You think a certain phenomenon beyond human power and cry out that it must be the handiwork of a god.”
Next came his most persuasive argument, “Men of the highest genius, even Newton, have been impressed by the wonders of nature and recognize an intelligent being as its creator.”
As determined by my folly, I answered, “Seeing nothing, I will acquiesce to you and Newton an admirable design and order. I hope you will not demand more. I take your word for the present state of the universe, and in return keep the liberty of thinking as I please on its primitive state, with relation to which you are as blind as myself.”
Finally, as I have written to my sorrow so I spoke in my dream, “If we went back to the origin of things and perceived the evolution from chaos, we should meet with any number of shapeless creatures. In the first instances of the formation of animals some were perhaps headless and others footless, some stomachless and others lacked intestines. Only those not defective in any important particular survived and perpetuated themselves.”
I stopped his protestations before they started, “Perhaps you will assert that deformed creatures never existed and that I am throwing myself headlong into chimerical fancies, but the order is not even now so perfect as to exclude the occasional appearance of monstrosities.”
I turned, my Saunderson, towards the clergyman and performed what is, in my Letter on the Blind, the coup de grâce. “Look at me, Mr. Holmes. I have no eyes. What have we done, you and I, to God, that one of us has this organ while the other has not?”
Suddenly my fanciful dialogue shifted to nightmare and, instead of the tears gushing from the eyes of the sympathetic clergyman, the menacing voice of the governor materialized from the void. “these are lovely sentiments my dear blind philosophe. They will nicely condemn you in the court of God and man. We will take your deformity into consideration by removing the mask that we offer unblind (if such things exist) heathens. It will do the people good to see your vacant eyes roll with your head. Such a treat to see a monster (as even you have named yourself) demolished.”
With the demonic intoning came the arms out of hell to lift me onto the block where my neck was stretched. The whoosh of the upswept blade penetrated my too-sensitive ears and the steel crashed down. Only then did I wake once more into this seeing body, screams strangling my throat with mingled horror and relief.
At a recent birthday party for my friend Sarah, I met a playwright who also writes TV screenplays. I mentioned to him that I was working on a second draft of my film screenplay, and that I had just that very day received an email from Final Draft to become a beta tester in order to work with them to make their software accessible with screenreaders.
The point of my bringing myself into the conversation was how awesome it was that the industry standard would soon be usable by blind and visually impaired people, but his next question was, “So…How do you appreciate movies?” Or maybe he asked, “What is your experience of films as a person without sight?” I’m sorry that I can’t remember his exact words, but it was something like that, and it made me launch into how I used to be able to see, and how there are so many movies from my years as a visually impaired person immediately accessible to my mind’s eye.
The Cook, the Thief, His Wife & Her Lover is always the first to come to mind because I watched it so many times, and because people’s reaction to the title (happy recognition/no clue) tends to be a good indicator of the tastes of my interlocutor, and this time was no exception. “That is a weird one,” said my playwright, and I felt the need to mention other films less “weird,” like Apocalypse Now. I also felt the need to mention that I write for the New York film Academy, as if it legitimized my film appreciation abilities! And perhaps it does…
Another fun learning experience for a person who hasn’t had a television in years was my recent Pilot Season 2017. Although I probably won’t watch–sorry, check out–any of these shows, Netflix’s Disjointed, wherein Kathy Bates heads up a ragtag and mostly stoned bunch in the legal cannabis biz, will be tempting, it was gratifying to learn that more than one book inspired this crop, including By the Book and Passage–inspired by A.J. Jacobs’ The Year of Living Biblically and Justin Cronin’s The Passage trilogy respectively.
When I first started writing for NYFA, my editor sent me some acting topics since I have acting experience, for example 5 Tips for Creating Character Relationships and I wrote her to say that I’m happy to do the acting pieces, but that I’ve worked on many a crazy short film–done some of the writing and concept, and most of the sound–and can geek out on pretty much anything filmmaking.
These two inspired me to pitch a Disability Pride piece celebrating real people with disabilities in film and television, which was approved, so look out for that in early July–just in time for NYC’s Third Annual Disability Pride Parade!
Last week I visited my ophthalmologist and learned that my blindness is caused by a mutation to the CERKL (pronounced like circle) gene, which, it turns out, is oddly not specific to my damaged retinas. At Genecards.org I read, “CERKL (Ceramide Kinase Like) is a Protein Coding gene.” And on Wikipedia I learn that “ceramides are a family of waxy, lipid molecules,” and that kinase is an enzyme, but I’m still not sure what this all means. I’m the wrong kind of doctor!
About a year ago I had a first round of genetic testing that came back negative. They had looked for more common (though still rare) degenerative diseases of the retina like retinitis pigmentosa (RP) and Stargardt disease, and had shown that in the world of rare eye diseases, I have a doozey. Then a few months ago Dr. Tsang, my ophthalmologist at Columbia Medical Center, urged me to test again as great leaps had been made in the swiftness of identifying rare gene mutations. What might have taken two years to find in the last test, could now give results in a few months. That is exactly what happened. In a few months, I learned that my recessive mutation takes place on the CERKL gene.
When I was a kid, I was diagnosed with retinitis pigmentosa (RP), though, through the years of degeneration, my symptoms hardly presented like a typical case. The symptoms of RP are generally a loss of night vision and far peripheral vision that gradually constricts through the decades, leaving the sufferer with tunnel vision that grows ever narrower. This means that people with RP can often read normal print long after they have need for a mobility aid, like a cane or dog.
Back when I was in my twenties and still living in San Francisco, I went to an RP support group and heard a man tell how he’d been waiting for the train in a downtown BART station reading a newspaper with his guide dog, when someone came up and told him, “You don’t look blind.” To appease the stranger, the storyteller put on his dark glasses. We in the group laughed very hard. (In such groups, a good amount of time is spent talking about how silly sighted people are.)
However, that man’s experience was not mine, and I felt a little envious. I wished I could still read normal print and run around with a cute guide dog. Instead, my weird version of retinal degeneration went in another direction. I lost some peripheral vision, and experienced night blindness–both of which signify damage to the rods, which make up the majority of our peripheral vision and sense light and movement. However, I also had a tiny chink removed from my macula–which is preserved until late stages in typical RP. Specifically my fovea, the central point of vision that consists of densely packed cones, which are the retinal cells that detect color and detail, blew out early on, making it impossible for me to read normal print. I could still make out large print for a long time if I placed it slightly off-center focus. Hence, I began to look askew at things in order to see them.
For me, it was only a few years between when I could not read the writing on the black board from the back of the class to when I could no longer read normal print. And yet, in many practical ways, I still looked and functioned perfectly normally. I could walk around without aid no problem, and that created a lot of confusion and shame.
As a person with a degenerative eye disease, I have experienced pretty much every notch on the sight blindness continuum, from normally sighted to nearly totally blind. In fact the vast majority of the world’s sight-impaired population is visually impaired, not totally blind. According to the World Health Organization ” 285 million people are estimated to be visually impaired worldwide: 39 million are blind and 246 have low vision.” However, these statistics tell us very little about what the individuals in either category see.
Doctors don’t tend to ask what I see anymore. An assistant may ask if I can see their hand waving in front of my face, but I have to tell them that I can still see the ceiling light if I place it in my periphery just so. In addition, they certainly never ask what has come to replace my lack of vision. Do they know that my visionscape presents a blast of fireworks–probably the explosive last gasps of the photoreceptors in my destroyed retinas–or the constant hallucinations curtesy Charles Bonnet Syndrome? Or that, when I’m tired I see less, or when drunk I see more, but when hungover less. When I am in familiar environments, my brain fills in information and I see more–just like the blind spot is filled in normal vision, so that, especially when I had more vision, I saw dramatically less when I was in unfamiliar places. For more on how the brain fills in vision, read Richard Gregory‘s classic Eye and Brain: The Psychology of Seeing.
Through my twenties and thirties my eye disease progressed in a haphazard way, but I still told people that I had RP, until recently, when I thought it seemed better, though more clunky, to describe my disease as a cone rod dystrophy, which explains the severity of the central vision loss at an early age.
It is a strange aspect of my slow march towards blindness that in the many years I spent as a visually impaired person, people often finished a conversation about my eye disease with the punctuation, “Is there a cure?” or “I’m sure they’ll find a cure.” Now that I’m basically a blind person, no one says anything about curing me. Of course, this could also be because I’m older. In any case, the irony is that now that I am older and blinder, there actually are glimmers of cures on the horizon.
From gene therapy to nanotechnology the possibilities of cure or cyborg-like augmentation are numerous and the darlings of the media. If you don’t believe me, check out the September 2016 National Geographic’s cover story “The End of Blindness.”
For about ten years, I did not have anything to do with eye doctors. It seemed to me useless. They simply confirmed the problem, but could offer no solutions. Then I started to get the feeling that things might be changing. Stem cell approaches were beginning to be a reality, even in the US, where stem cell research had been squelched by Bush and will likely be squelched by this Hydra in the White House, if the prolife heads prevail.
But now, with my CERKL gene identified as the culprit, I learn that curing my eye disease may have greater possibilities than stem cell therapy. In a CUMC blog post about his research Dr. Tsang is quoted as saying,
“Although gene therapy has shown promise in RP, it is complicated by the fact that defects in 67 genes have been linked to the disorder, and each genetic defect would require a different therapy. … Our study shows that precision metabolic reprogramming can improve the survival and function of affected rods and cones in at least one type of RP. Since many, if not most, forms of the disorder have the same metabolic error; precision reprogramming could conceivably be applied to a wide range of RP patients.”
RP patients as well as those like me who have one of the 200 mutations associated with other retinal cell degeneration have reason to be optimistic in this approach, since the rarity of the underlying cause will be less of a factor. In terms of research funding and focus, this is very good news for people like me who have odd mutations.
Hence my eye disease is a symptom that may be treated with drug therapy that may relate to many other kinds of problems. Dr. Tsang told me in the office that it may be treated with drugs someday, rather than surgery. In the article on CUMC’s blog he noted , “‘Further studies are needed to explore the exciting possibility that precision metabolic reprogramming may be used to treat other forms of RP and retinal degeneration.'”
The article mentions that some potentially therapeutic drugs may already exist to treat other conditions such as “enzyme blockers called thiomyristoyl peptides, a common plant pigment known as quercetin, and vitexin, a substance derived from the English Hawthorn tree.”
I personally really like the idea that hawthorn, a tree sacred to fairies, might someday provide me a cure!
For now, Dr. Tsang is recommending daily exercise, which has shown to be effective in slowing down the rate of degeneration in mice with RP. As one of Dr. Tsang’s assistants put it to me in an email:
“The article about SIRT6 found that, in mice with a similar retinal degeneration, better sugar metabolism (in the form of lactate) for the retina cells helped delay the degeneration. This is still in the animal/research phase of research so there is no specific recommendation we can provide based on this study right now. At this time we do not have a way to deliver lactate directly to the retina. However, daily exercise increases lactate transiently and was shown to be helpful for mice with a retinal degeneration. Since daily exercise is beneficial for many things anyways, we recommend it to our patients as perhaps it may also help their retinas too!”
Since exercise might have some impact on my eye disease, I thought I’d ask about diet, and Dr. Tsang recommended three servings of fish. I clarified, “A week right? Not a day?” He and his assistant laughed. “Then you smell like fish,” he said, which begs the question, would I be willing to smell like fish for a chance to see again?
The thought that all my terrible living has actually exacerbated my disease is unsettling. My whole life I’ve felt a victim of genetics, and now it turns out I may have accelerated my blindness by feeding the mutation with booze and youthful drug adventures, indifferent eating habits and not enough exercise. On the one hand it is good to know that I may be able to have an impact on how I see for the rest of my life and on the other, I am saddened at the thought that too much has been already lost, and that suddenly I find myself to be an author of that loss.