Last year I wrote about why Disability Pride Parades Matter, from a bookish perspective since I unfortunately did not make it to the parade. This year, I did make it and was very pleased to run into friends including my old pals from Lighthouse Guild Music School! They may never forgive me for flubbing my chance to distinguish the Lighthouse from amongst the hundreds of other disabilities organizations in my impromptu loudspeaker announcement, but perhaps this video mitigates somewhat. Anyway, please excuse my excitable camera guy, who got a little nervous when I took the mic–he’s a much better singer composer!)
As an actor and writer for New York Film Academy, I’m acutely aware of the challenges actors with disabilities face. So it was exciting for me and many others to have Micah Fowler of the current hit TV show “Speechless” grand marshal this year’s Disability Pride Parade.
Born with cerebral palsy, Fowler started acting when he was five. In a Vulture interview Fowler said, “I think it is sad that less than 2 percent of actors on screen are themselves actually disabled. Growing up a huge television and movie fan, I couldn’t help but notice the lack of representation of both disabled actors and disabled characters being portrayed on television. So I am so very excited that “Speechless,” a prime-time network-television show, conquers both of those missing links by having both an actor actually living with cerebral palsy as a main character and by having a “character” in the story line living with a disability.”
Although Fowler and other young actors with disabilities such as Lauren Potter who played Becky Jackson on Fox’s hit show “Glee” and Jamie Brewer who played several recurring roles on “American Horror Story,” including Nan in “Coven,” who both have Down Syndrome, offer viewers the glimmer of a new trend of hiring actors with disabilities, things are still pretty dismal.
According to a Variety article informed by a 2016 study released by Ruderman White Paper, “95% of characters with disabilities in top 10 TV shows are played by able-bodied actors,”
The study was commissioned by the Ruderman Family Foundation and took a comprehensive look at employment of actors with disabilities in television, and reveals that “people with disabilities are the most unrepresented minority in Hollywood.”
In all of this, there is a need for activism and a push for hiring practices to shift, but there are also things disabled people can do for themselves by themselves. A good example is marching in disability pride parades, because they bring bunches of disabilities into the public eye.
I could have wished that there were a few more people along the parade route yesterday, but there were a whole lot of people marching, and it felt good, though, I believe it was a little lacking in spectacle–a few too many matching t-shirts, if you ask me. I think we need to rip a page off the gay pride parade handbook. We need costumes and we need floats! I have big plans for a braille dress next year! But of course, Gay Pride has got a few decades on us.
Daryl Mitchell, who stars in NCIS New Orleans, was an established actor before a 2001 motorcycle accident left him paralyzed from the waist down. With support from friends, including Denzel Washington and Chris Tucker, he has continued his career and now stars in “NCIS: New Orleans.” He is an advocate for employing actors with disabilities. In an Ability Magazine interview Mitchell says, “You meet with these Labor Department guys, and you can tell everybody is enthused and ready to go. That’s the main thing, really. Their willingness to fly out from Washington and see us in Los Angeles and speak with us says a lot about them. But it’s really a matter of what we need to do, what we’re willing to do as people with disabilities. We need to be more boisterous. We need to let the world know that we’re here.”
So here’s to boisterous disabled people, costumed and bejeweled, marching in the Disability Pride Parade 2018!
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.
When I first read about ylang-ylang (Cananga odorata), I’d no smell associations, but I was intrigued because it is included in so many aphrodisiac blends. It is both relaxing and stimulating, which is a fabulous combination when you’re trying to get it on.
Then I smelled ylang-ylang out of a labeled essential oil bottle, and I realized I’d smelled it before. I was transported to the sexy time in my life when I could walk around unaided–no white cane, no guide dog, no boyfriend. I’d just arrived in New York City and I could see well enough to walk around without mobility help, but not well enough to read signs or see into shops.
I was a grad student at NYU and was visually impaired, but if you saw me walking around campus, you would not know that I was not like everybody else, unless of course you knew me and therefore knew not to be offended that I did not recognize you. If you recognized me from a class but did not know that I was visually impaired, you likely thought my lack of acknowledgement meant I was a snob. Anyway, in those days of wandering around enjoying the feel of walking if not the visuals that many peripatetics associate with the activity, I regularly got slapped pleasantly in the face by a smell that emanated from a large and bustling shop–perhaps a hair salon–that sat on the corner of Waverly and Sixth.
Each time I walked by, I would hesitate and want to enter, wondering what it was because that smell reminded me of an earlier scent memory. I’d coveted the brilliantly colored hair on the box of Salon Barbie, and her dyes–red, purple and black–smelled of what I now suspect to have been some kind of synthetic ylang-ylang. The smell stuck with me though any fun I may have derived from the oddly punk rock toy has completely evaporated.
That said, I was never a very olfactory-oriented person but rather a visual one. I can still see the photograph on the box of that damn doll with its perfect purple hair quite plainly in my mind’s eye. I still feel like a visual person, but I’ve not got the sensory inlets going anymore, only the imagination and the hallucinations.
The deprivation has finally led me to appreciate smell, and recently I find that I get a little depressed if I don’t have any around–pleasant ones I mean–those that I can control, or at least name and manipulate. The fakey-wakey smell of my cheap-ass Dove “cucumber” shampoo does not count.
Though I cannot, at present, afford to have everything be blessed by natural fragrances, I fantasize about a future wherein I will have complete control of my smellscape. I underline the word fantasize here, because though I long for the day when I can indulge in all the aromas I read about and lust after, having complete control over what enters the nose is of course impossible, as smells permeate all, and each person has their own. Sadly my smellscape could not be vacuum-sealed unless I had no desire to go out or have sex.
Speaking of sex, let’s return to the heady floral scent of the tropics.Ylang-ylang, long admired in its native islands of the Philippines, Malaysia and Indonesia for its good effects on libido, skin and hair, grew commonplace in far-away England as Macassar Oil, which was so popular as a styling product for men, that doilies were soon required to protect the backs of upholstered furniture. As mentioned in Aroma Victoriana, the men and women of 19th century England were as mixed up and contradictory as any society, and so it is likely the sensual fragrance of ylang-ylang, reminiscent of bodies barely clad and warmed by the sun, was likely more than one kind of bother in the buttoned-up drawing rooms.
But ylang-ylang is more than an aphrodisiac, or rather, its effects on the libido result from its ability to relax and regulate extreme emotions and to calm the physical and mental effects of anxiety. As Peter Holmes remarks in Aromatica:
” In dealing deftly with intense emotions, Ylang ylang bestows a relaxing, softening, harmonizing and lightening grace over the energetic Heart – a function that is expressed in Chinese medicine as ‘nourishing Heart Blood.’ Its ability to transform dark negativity into lightness and positivity is perhaps unique. In opening us to the lightness of being, Ylang ylang is clearly a remedy for the soul as much as for the body.”
Living now as a vagabond, my essential oil collection has dwindled. Knowing this, my best friend and owner of Yes Organic Boutique, gave me a beautiful cream made with ylang-ylang and rose essential oils. I slather it on at night to smooth the wrinkles of face and psyche. The calming effects of ylang-ylang have been of particular interest to the latter, which has recently been subject to panic attacks.
I was a panic-prone person in my twenties, so I can’t blame it all on aging and blindness, but these two aspects combined with the recent casting off, has allowed the sleeping giant to rise. The first panic struck on the plane from NYC to Denver and hit me again in the bus from Colorado Springs to Albuquerque. In lesser forms, it hits me in each new house, where even the simplest cupboard or table can present a problem–one can be mired in a cul-de-sac no bigger than a public bathroom stall when one cannot see. As mentioned in Winter Wonder Maze, I’m terrible at being blind, and worse when I feel people’s eyes on me. So, putting myself in the position of being in the households of others, with their crap acting as constant reminders of my lack of freedom and control seems an odd place to be. Stupid maybe.
And yet. And yet, who is truly free? My dear friends with house and car payments, children and spouses may be free to walk about the cabin, but they are not completely free either. Freedom comes in degrees, independence a balancing act.
My mother wonders why I do not get another guide dog. “You used to care so much for your independence,” she opines. She does not know how hard-fought and lonely it was. She does not feel the memory weight of its superficiality, tethered as it was to anger and the need for a love that I wielded like a club.
She also does not believe that in these strange blind cul-de-sacs there is another freedom, and the only one that may yet transcend this mortal coil. I will, like all of you, grow feeble, if I am permitted to live, and this body will be but a sack of memories of a time when the body was free. But if the mind is free, there is movement in the soul, right? And, just as those ancients used scent to communicate with the gods, I use smell to transport me out of this body that fears each vase-clad armoire as if it were an on-coming bus, this body that shuffles about like that of a very old person, slowly, carefully, with embarrassing trepidation.
If my worth were measured in my tiny steps taken , my life, like Prufrock’s measured out in coffee spoons, I would surely collapse in a heap of self-loathing. But if I follow the scent of the Tropics to a place where I can learn and learn and continue to learn, I do not feel old or blind or feeble. Not useless. On the pleasant smelling days, I believe myself to be an organism still sucking life and pleasure, in and out.
The trick is to follow the nose up and up into the rarified air of the unforeseeable future.
The trick is not to panic.
The trick is to keep breathing, nostrils flared as if smelling a flower for the very first time.
Two winters ago, I got a call from my agent in LA to tape an audition for Hannibal, and it led me on a journey from stars in my eyes to a brand-new appreciation of smell.
I was, as an actor, thoroughly green. I did not even know that for TV/film auditions you sit or stand still with the camera in your face and speak the lines with all the emotions your head can muster. You must have your lines memorized or virtually memorized. If you can see, you can bring in your sides and glance at them if necessary, but if you are blind, like me, you cannot rely on this visual blankie.
Speaking of blankies, I did not know that props are generally pooh-poohed, because I’d not yet read Marci Phillips helpful book The Present Actor until after the fact and learned that:
“Whatever people normally carry around with them is usually regarded as acceptable. A cellphone, iPod, blackberry, bottle of water, briefcase, bag, magazine, pad, pen, jacket, etc. are all fair game…. If you’re eating in a scene and you choose to bring actual food into your audition, make sure that you’ve given this a few trial runs at home first.”
I did not bring actual food into my audition coaching session but rather an eraser on a plate, which I mimicked eating like it, were pie with an actual fork.
It is difficult to say how terrible my self-tape audition would have been if my agent had not found me a professional coach with whom I could work for an hour (and film the self-tape) on the Sunday before the Monday when the tape was due. For those non-actors out there, I was lucky to get a couple extra days to memorize and rehearse because the call came on a Thursday night. As gently as possible the coach, Jonathan Hammond, took my eraser-plate away from me and told me that props came across as a little bit amateur.
I had received two scenes and both were familiar because I’d seen/heard the film Red Dragon many times, and read the novel at least twice when I received the call to audition. Reba McClane is one of the best blind characters ever to grace a novel, let alone a screen. Reba was created as a round and nuanced blind character–a rare and precious thing–by Thomas Harris in Red Dragon, the first of the Hannibal series, from which the films and then the TV series developed. Hence, I admit I was pretty excited and honored to be asked to audition. I tried not to think about how awesome a job Emily Watson did in the role.
The first scene I’d been given was the scene where Reba invites Francis Dolarhyde into her home, offers him pie, and tries to draw him out. It was different from the film. Reba’s memory of a cougar at the zoo reverted back to the original llama of the novel, but in each incarnation, the scene has a quirky charm driven by Reba’s rambling.
The second scene for my audition was totally different, scary. Dolarhyde has Reba tied up and she tries to understand his anger. Having done a little bit of theatre, I embarked on my home rehearsals by clinging and pleading melodramatically. Thankfully, Alabaster–who was helping me memorize my lines–told me to sit down and act tied up.
With rehearsals through the weekend about every couple hours, I had gotten it pretty good, but my real nervousness combined with the fact that Jonathan was a pro, took this scene to a level that gave me great insight into acting, and made me realize (once again) that I do not have the stomach for it.
Jonathan told me that the one who got the part would be the one who breaks the casting director’s heart. That was a revelation. I did it with him the second time to such an extent that I had to keep myself from crying after we were done. Alabaster had walked in and was like “wow.” It was so intense; I still remember the feeling of my heart pounding and the need to sob with wonder and amazement. I get why actors are fucked up. Feeling that intense for no reason does not feel any different than feeling that intense for personal reasons–the heartrate still skyrockets, and the body says fear or love or whatever. When it was over, I was confused. I’d never felt that intensely for something that was not a product of my own rumpled psyche. I suppose one taps into one’s own psyche to get there, but still, it was strange to feel that intensity while “acting”.
I can’t say that the taped third try was as good as that second one of memory, but for an untrained actor, I was proud to have pulled it off. In my own mind, I was working very hard to send a tape to my agent that was good enough for her to pass on to the casting director and not dump me. Just good enough to impress her. the idea of actually getting a part in one of NBC’s hottest dramas was impossible, though it’s hard after it’s all done to not have some stars in your eyes, and since I sent off my two scenes in the week before Christmas, I had three weeks to contemplate how the experience would change my life.
Poor Alabaster had to watch (and describe) the entire first season and part of the second of the horrifically graphic Hannibal. (The mushroom-feeding episode is one neither of us will ever forget.)
Also in those three weeks, I started thinking about and researching on-camera classes and found a super little school called MN Acting Studio. I read Matt Newton’s book and signed up for an on-camera class with Joseph starting the end of January.
And, I’m not sure exactly how it happened, but this was also the time that started me Googling DIY beauty. I think it was that I thought if I had another audition, I should probably do a little more with the way I looked. My outfit choice for my first big audition was more about the character I knew from the books than what they were probably looking for in a supporting role–the love-interest of a starring serial killer. I don’t think I gave my makeup or hair much thought.
Cheap beauty tricks led me to DIY facials, which led me to discover essential oils. I started buying essential oils and was amazed how smells that I’d smelled before now suddenly had names.
I read the monographs–part historical, part botanical–with wonder and excitement. I calmed my heart with lavender (Lavandula angustifolia) and my allergies with German chamomile (Matricaria chamomilla). There is something quite powerful in discovering chemical constituents for fun light self-medication. The new-discovered enjoyment of naming ylang-ylang (Cananga odorata) and putting a smell to the laurel (Laurus nobilis) of Apollo’s poets and prophetesses cannot be over-estimated.
It may be that reading through all the Hannibal books for the third time primed me for my smell explorations, as Hannibal Lecter is of course a olfactory -aesthete, but whatever the reason, reading about essential oils struck a nerve. Although two years is probably not enough time to gauge such things, I feel like this exploration has changed the course of my life.
I’m not saying that I plan on setting up shop as a serial killer, but I do appreciate the fact that Hannibal recognizes the beauty and importance of the oft-neglected sense–the fallen angel, as Helen Keller puts it.
“The air was music. Here were pale tears of frankincense awaiting extraction, yellow bergamot, sandalwood, cinnamon and mimosa in concert, over the sustaining ground notes of genuine ambergris, civet, castor from the beaver, and essence of the musk deer. Dr. Lecter sometimes entertained the illusion that he could smell with his hands, his arms and cheeks, that odor suffused him. That he could smell with his face and his heart.”
I did not get the part; they decided to go with Rutina Wesley (not blind) of True Blood fame. I can’t say I was not disappointed, but I’m happy to have been asked to audition, to be a part of a new and important entertainment revolution, to have people with disabilities represent themselves onscreen.
One of the dreams I nurtured during my three weeks of waiting was to go on talk shows and educate the public about the important but still nascent trend that will shape the face of entertainment as surely as it has been changed before. Soon having anything less than a deaf actor cast in a deaf role, or a blind person cast in a blind role or a wheelchair person cast in a wheelchair part will perhaps reveal itself to be as shameful and insulting as blackface. Until then, I open my nostrils to the tears of frankincense and the shy flowers of mimosa and imagine how sweet will be the revenge!
Before the base closed to make way for the National Park, Lucasfilm, and the Thoreau Center, my mother and I drove regularly through the Presidio to buy cheap groceries at the commissary or to the Letterman Army Medical Center for visits to the pediatricians and then many eye doctors. My dad was in the military, and as a dependent, I received benefits that extended beyond my parents’ divorce.
I loved the drive that took us through the Arguello Gate, punching our car into an enchanted forest of Monterey pine, Monterey cypress, and the Tasmanian bluegum, a eucalyptus all the way from Australia. I did not know their names then, or that these seemingly primordial trees had been planted but a hundred years earlier. Inspired by the success of Golden Gate Park and Planted by the U.S. Army, these trees were meant to beautify the windswept brush lands that were an eyesore to the San Francisco Bay newcomers. It was no accident that the sudden woodlands reminded me of the enchanted New England greenery I looked longingly at in my mother’s pictorial atlas of America. The easterners who came to take over the Presidio after the Mexicans did not appreciate the sandy bluffs blowing into their windows or the scrubby barrenness sweeping down to the bay. So they made that landscape familiar by planting thousands of trees. And in those trees they nestled their Georgian Revival buildings for my mother to point to, with all the authority of having, for a few years, been the wife of an officer, “That’s the house of a general.” Or “those are bachelor quarters,” and I was duly impressed. One of those exotic brick buildings is now a boutique inn for tourists looking to enjoy amenities and hiking trails.
but this was the early ’80’s, at least ten years before the base was decommissioned, and long before I had need to know that the landscape was man-made. To my keen young eyes, it looked ancient, as if it were what San Francisco looked like under or behind all the people and buildings–prehistoric, darkly enchanting and full of dappled light. I could not know it was all fakery beyond those gates, all artifice and make believe.
In fourth grade, I suddenly couldn’t see the writing on the blackboard from the back of the class. I told my mother and she made an appointment at the optometrist. I was excited. Getting glasses seemed to me to be very grown up. We drove to one of the bungalows that lay in covered strips with wooden steps leading up to planked covered walkways, almost like an Old West town. The building was dark and creaky. I sat in the big chair and looked through the tiny eyeholes in the cartoonishly huge lens machine. I could not read the small print on the chart. Still, no matter how many times the lenses shifted and the doctor asked, “tell me if this one is better,” (click) “or this?” (click) “this one, or this one,” the line did not reveal itself to me. I was a child who wanted to please, so I tried very hard to see a difference. “Maybe, a little better.” I’d say, but there seemed to be no difference in any of the shifting lenses–no better anyway, only worse. Many of the lenses made my vision blurry. I did not know how to explain then that my vision had not been blurry before. I have never lived in a blurry world. My eye problems have nothing to do with focus. It was always a question of a lack of information, of a pixilated visionscape, of television fuzz, but I hadn’t the words then, or even much of all that was to come.
The optometrist prescribed some glasses, though he sheepishly explained that he could not get my vision down to 20/20. They did nothing to help me see the writing on the blackboard.
We went to another optometrist and then maybe an ophthalmologist. Again, there was the same clicking of lenses with its odd attendant sensations of shifting air currents so close to the eyeball, with no luck. “Maybe a little better.” Or “worse,” was all there was for me to say. After a long time, the eye doctor called my mother in and told us that he could not correct my vision.
Perhaps it was that doctor, or perhaps the next, possibly to allay my mother’s fears or perhaps to mitigate his own impotence, said, “Her eyes are growing too fast for her body.” Or maybe he said that my body was growing too fast for my eyes. That satisfied us for a little while.
Finally, we were referred from the bungalows to the main hospital–the building that has since been demolished to make room for the Letterman Digital Arts Center–to see the head of ophthalmology. This was when my mother began to worry that something queer and a little scary might be going on. Though My vision loss was not very impressive, maybe 20/40 in the worst eye, the head of ophthalmology could not offer a solution either. He sent me out of the room to talk to my mother, to berate her for bringing me to him.
In response to my mother’s worried summery–eye doctors offering wacky opinions and no answers–this brilliant man spoke lamely and with spite, “Maybe she can’t see because you’ve been taking her to so many eye doctors.”
This summit of ludicrous subterfuge, this apotheosis of smug defiance in the face of ignorance has oft been repeated by my mother and myself (who was loitering just outside the door, listening) as the climax in our sad little detective story: What was killing my sight?
My mother, never good at checking her emotions, allowed her voice to rise with tears and said, “then why can’t she read the writing on the blackboard?” She would not accept another answerless dismissal. To his credit, he did not dig in, but relented, perhaps embarrassed deeply, though on the surface the coolness remained. He called me back into the room and took another look into my eyes, with his headlamp and magnifying monocle, and saw…something. I can only imagine that it was a blip on the landscape of my retinas, a suggestion of that dystrophy that would grow into eventual blindness, or it may be that he saw nothing, but suspected something, something remembered from medical school or read about in an ophthalmology journal. Perhaps it was a eureka moment that sparked the intelligence of this head of ophthalmology–an intelligence that had been momentarily dimmed by ignorance. Maybe it was then that he remembered a degenerative eye disease called retinitis pigmentosa (RP), or maybe it was later, but, in any case, the diagnosis would be forthcoming, and one which I would use for decades.
As it turned out, my eye disease did not present like RP–I lost my central vision first whereas most people with retinitis pigmentosa lose peripheral vision first, so that as it progresses, they experience an ever more restricted tunnel vision. My disease progressed from the center outward, albeit jaggedly, leaving pockets of living cells.
Thirty some odd years later, I’ve learn that my cone-rod dystrophy is caused by a gene mutation that remains unidentified. In a world of rare eye diseases, I have a really rare one. As I write, my blood is going its second round of genetic testing, and it may be that I have a mutation all my own.
Back then, a diagnosis of retinitis pigmentosa was at least a name, a thing I could tell people, and it was rare enough and unique. I was strangely proud, so that when at the end of that first year, I was sent across the road to the Letterman Army Institute of Research (LAIR) for observation and experiment, I was excited. For three days they ran me through a battery of tests–from organizing little disks of gradient colors to a primitive electroretinography (ERG), putting me into a dark room to measure the electronic firings of the photoreceptor cells in my retina. The ERG is standard procedure at retinal specialists now, but they were just figuring it out back then.
In my most recent visit to the ophthalmologist, after dilation and numbing drops a technician laid thin wires along each of my bottom eyelids and taped the ends to my cheeks and forehead to keep them in place. The thin wires were then connected to thicker ones that in turn made their way into a computer. But that first ERG, a lab rat was I, laying in the dark for many hours with my eyelids held open by grotesque contact lenses from which the wires sprung. That had been perhaps the scariest, but also the most important test I underwent at LAIR, one that likely contributed to the current state of the art technology that even suggests the possibility of a near-future cure.
I subsequently did a presentation on the experience. By that time, I’d moved from fourth grade to fifth grade, and in my private girl school, that meant a change in uniform, from green plaid bib dresses to sailor-style middies and pleated navy skirts.
My presentation on retinitis pigmentosa and my battery of testing at LAIR, with its photographs and little moments of humor, like when I described looking into a contraption to click a button when I saw (and did not see) a tiny red light move into and out of my visual field, as resembling nothing so much as staring for hours into an illuminated toilet bowl, got a laugh from my classmates. I also got some pointed questions from my teacher. Perhaps she, along with my other teachers, was concerned, but they did not let on. It was a small school and I was a scholarship child in a sea of very rich girls, so there was perhaps a lot of feeling sorry for me going on. Or perhaps not. Maybe it is just my grown up self who feels sorry for that little girl who tried so hard to make light of something scary and totally out of her control. Out of even the control of her mother and teacher’s and eye doctors too.
The progress of my eye disease has been the degeneration of my sight–progress and degeneration have thus been strangely confused in my mind since I was a kid. And today, it is not clear to me whether this long eye progression of sight to blindness, the slowest of calamities, akin to aging in its relentless and somewhat boring degeneration, has diminished or enhanced my life experiences. But human existence being what it is–complicated and fleeting–I imagine the answer must be both.
*This is the first of #52essays2017 written with all four senses and remembered sight. Read more about the project and the woman behind it HERE*