The Blind Feeding the Lame: Growing Disabled with Dad * Essay & Live RISK Performance

This essay about the very different experiences my father and I had growing disabled first appeared at Catapult last June. I performed a storytelling version for a live taping of the Risk! Podcast, which aired in December in an episode called “Quality Time.” Scroll down for the performance followed by the essay.

I republish both versions here in honor of my father, Lee Goodin, who died a year ago tomorrow. It was, however,  a year ago today that I received the call that told me he was dying. My stepmother had used his phone to call and so when I answered, I was prepared to receive birthday wishes, but instead received her no-nonsense, nurse-practitioner announcement that he was in the hospital and not coming out. So my birthday on August 18th and his deathday on August 19th are forever linked in a two-day bittersweet celebration of life.

You can read more about my dad in my personal obituary for him and get a taste of his writing in this post that includes three of his many letters to the editor published in the San Francisco Chronicle. But for now, please indulge my need to tell you about our respective disabilities and the joy of sharing delicious food and booze no matter the obstacles…

Performance

Photo of Leona Godin on the large Bluebird Theater stage taken from the balcony. She stands alone with a mic and her cane, Moses, wearing black and sunglasses.

Essay

Now my dad is disabled. The military man, the world traveler, is in a wheelchair. A degenerative neurological disease has turned his feet into blocks, his hands into mittens. But we still can drink together, his blind daughter finding herself singularly helpful in these new circumstances. In his kitchen, where his wheelchair cannot fit, I slosh Beefeater into glasses, and, with directions called out from the dining room, I locate the pâté, the crackers, the Dijon mustard, the knife, and return to the table, not realizing that a strange moment of intimacy, such as we’d never shared before and will likely never again, is about to take place.

*

I barely knew my father from the time I was three, when my parents got separated and then divorced, until I was nineteen and surprised us both with a visit.

While I grew up in San Francisco with my mother, he was stationed in Thailand, Turkey, Italy and Germany. I saw him twice during those years. I believe the first time was when he and my mother signed their divorce papers, perhaps I was five, and we took a ferry ride in the rain to Sausalito. We went into a glassblower shop and that luminous fire magic took my breath away. He bought me a glass Cable Car and a bird. My mother drove him to the airport and I have a memory of waving to him until he disappeared. Immediately I crumpled to the floor, and I remember the feel of that Ford’s floor and the look of the child weeping as if I could be the protagonist and spectator both.

The next and last time I saw him as a child, I was nine. My grandmother died and he returned to San Francisco for the funeral with his new wife. Not long after that, I started losing eyesight. It was just the beginnings of the eye disease that would eventually make me blind. For decades after diagnosis, I was visually impaired, and it was as a visually impaired person that I met my father again, after several years of dwindling correspondence had resulted in us finally losing touch.

*

The night before we were to set out with our giant backpacks for a three month Euro-Trek, my best friend called to tell me that she had fallen off the wall at Ocean Beach. She’d been drinking a farewell bottle of cheap wine with her boyfriend when her hat blew off. Reaching for it, she’d slipped. “I hurt my knee,” she told me and said that it wouldn’t change a thing. It turned out she had torn a ligament, and that fact changed everything.

At that time in the early nineties, plane tickets to Frankfurt were among the cheapest, which is how we ended up flying into the city next to the town of Wiesbaden, where my father was stationed. Upon arriving in Frankfurt with my crippled best friend, in the early morning hours, with the lurid airport porn shops and bar that served us, the foreignness was overwhelming. They’d given me a wheelchair to push her and our packs around, but once we left the airport, how I’d get her anywhere came crashing down. I decided finding the bus to the Wiesbaden military hotel was the only viable option.

For the next two days, my best friend did nothing but lie in bed and moan. Once I tried to go out by myself but it was a disaster. My low vision made it impossible to carry out any plans, as I couldn’t read street signs or bus numbers or maps–this was long before GPS and iPhones helped to level the playing field for visually-impaired travelers. Although I’d had no intention of contacting my father, and probably wouldn’t have if my best friend hadn’t been out of commission, I’d agreed to take his number.

If large black letters were set on a small expanse of nothing–a 4X6 index card for example–I could still read using my peripheral vision. With a cigarette in one hand and trembling fingers, I dialed the number. I listened to the foreign ringing until the voice, somehow still unmistakable as my dad, picked up, and I said, “Hi Dad, It’s me.”

“Oh hello.” He may have even said, “Hi kiddo, what’s up?” Apparently unruffled.

I said, “I’m in your neighborhood and thought I’d give you a call.”

“What neighborhood?”

“I’m in Wiesbaden.”

He asked if I had plans for the evening. I looked over at my best friend prone on her little twin bed, and said that I was pretty open.

A year or two ago, after my dad was put in the wheelchair but before his chronic infections had progressed to where they are now, during one of our pleasant “liquid lunches,” I asked him if he’d had forewarning about my arrival from my aunt and uncle. It had suddenly occurred to me, after all these years, that his nonchalance could have been attributed to them mentioning my trip to Europe. He assured me that he had had no idea that I was coming, but that being career military primed him on being prepared to deal with unforeseen events.

On our first father daughter date, we went for dinner, which was a miracle of conviviality. We smoked and drank wine and talked as if no years had passed, no childhood lost. We held hands in the misty streets and he kissed me goodnight. Such is the strangeness of the human psyche, that the exhilarated bounding I did down the enormous, crystal-dripping hallway of the hotel built for international delegations–at that late hour empty but for me in my exuberance of finding a father–sits in my heart alongside one or two of the most romantic moments of my life.

*

After my dad and his wife retired, they moved back to the states, first to a tiny town in California’s Gold Country, where he became mayor, and then to his native San Francisco, where he still lives. As I turned from a visually impaired person into a blind person, my dad metamorphosed from an able-bodied person into a disabled person. The neuropathy progressed from the soles of his feet up to his knees, and from the tips of his fingers halfway up his arms, leaving him without sensation. When he stopped being able to feel the pedals of his Jeep, he had to give up driving. His wife continued to work as a nurse practitioner. She still works and goes to the theater and travels, while he has degenerated into helplessness.

They’d been accustomed to go on grand vacations for over thirty years–to more than a hundred countries and to all seven continents, and now she does these trips by herself. Putting my dad in what he calls “my kennel”–a small group home for elderly people in Pacifica.

It saddens me that for several years, my dad has spent his days sitting in his wheelchair, afraid to venture out alone, reading the newspaper and watching Netflix, all day while she’s at work. On more than one drunken occasion, he told me, “If I thought I could manage it, I’d shoot myself in the head.”

*

Nearly 1 in five Americans have a disability, and the vast majority are older people, according to the U.S. Census. When I was visually impaired, I never thought of myself as disabled–the very idea of it would have been insulting. As I’ve aged into my disability, both in terms of acuteness and familiarity, I’m proud of being a marginalized group on the rise. Proclamations of non-discrimination pertaining to diversity still do not often include disability, but that is slowly changing. Unfortunately my dad is of the wrong generation to benefit from this change. I hope to live to see it blossom.

Disability is the one variety of diversity that can strike anybody at any time, so why not prepare people to embrace it as difference rather than affliction? This shift in attitude will likely benefit you. At the very least, it may help you cope with your end of life disabilities, or those of your loved ones.

Having started on my road to disability at a young age, I feel strangely equipped to deal with what’s to come. In his 1911 essay “The Handicapped,” Randolph Bourne insists on the benefits of growing up and into oneself and one’s (dis)abilities:

When he [the handicapped man] has grown up, he will find that people of his own age and experience are willing to make those large allowances for what is out of the ordinary which were impossible to his younger friends, and that grown-up people touch each other on planes other than the purely superficial. … He will have built up his world, and have sifted out the things that are not going to concern him, and participation in which will only serve to vex and harass him. He may well come to count his deformity even as a blessing, for it has made impossible to him at last many things in the pursuit of which he would only fritter away his time and dissipate his interest. He must not think of “resigning himself to his fate”; above all he must insist on his own personality.

Even after more than a hundred years have passed since Bourne’s essay appeared anonymously in The Atlantic Monthly, it seems to me that we have yet some growing up to do. When will we finally recognize ourselves as precariously able-bodied, tending towards disabled, instead of constantly comparing ourselves to some mythical potent youth?

*

Last night my dad called to tell me that he’d made his decision. For almost a year he’d been facing the choice to either cut off the feet that keep getting terrible infections from wounds that do not heal because of his lack of feeling down there, or continue to get infections that will hasten his death. He reminded me that when we’d first had this discussion, I said to him, “The choice seems to be your feet or your life.”

It had struck me as obvious. But he’s resisted all these months, and yesterday brought finality. “I’m saving my feet and sacrificing me.”

Although the choice has been complicated by his weak heart that might not survive the amputation surgeries, it has always been more than loss of life that frightens him, I think. He prefers to die whole and intact. The idea of being footless would irrevocably launch him into the land of the disabled.

“No heroics,” his wife had told me last week, I think to prepare me. “He’ll go home and get what’s called palliative care.”

I was meant to understand that route was terminal. My dad confirmed it in a subsequent conversation.

“When do you go home?” I asked.

“Maybe a week, maybe a month,” he told me, “but don’t get your hopes up. It doesn’t look favorable. Don’t dwell on it.”

Between his nurse practitioner wife and his no-nonsense attitude all the conversations in the past weeks that touch upon his death, up to and including last night’s, have been singularly devoid of tears. It feels strange even to write about this finality with no surface emotion. I know that the loss of my dad will be painful, but I also know that he’s not been living the life he loves for a long time, and that the ground has been laid for all of us to let him go. Besides being world travelers, my dad and his wife had been avid skiers, avid theater goers, avid devotees of the good life, and I had, through many transcontinental cocktail conversations and on my bi-yearly visits, enjoyed that with him. I will miss our liquid lunches and our drunken conversations, but I know that he is already missing so much more.

*

I place the pâté, mustard, breadsticks, prosciutto, crackers, a knife, a plate, and lots of napkins on the table, my dad directing my movements. “There, yes, put it there. Open that prosciutto.”

He had once been a wonderful cook–the sort that took pleasure in serving up multi-course meals for ten or twelve intimates–and so this fumbling with food in front of him provokes more than a little self-consciousness. I do my best with the butter knife to slice the thick Trader Joe’s plastic, muttering a narration of my efforts, though he can see my progress perfectly well. I finally get a hole in it and rip the rest. “Now what?”

He informs me that the prosciutto must be wrapped around the breadsticks, like flesh over bone, and we get to work.

“Ah, shit” he says, and I hear a delicate snap. These are dainty breadsticks, no thicker than my pinky. Without feeling in his hands, all digital movements must be guided by sight alone with no tactile input. Hence, it’s awfully easy not to know one’s strength in the way of breadsticks and crackers.

I on the other hand complement this lack with my tactile-heavy relationship with the world. I ask if I can make him one, and he agrees.

I take a thin breadstick and a thin slice of prosciutto and dexterously roll it up. It is much easier than rolling joints or burritos. I hand it to my dad who smacks his lips. Then I make one for myself and I smack my lips. We continue for a few rounds.

I ask what the plan is for the pâté, and he instructs me to take a cracker, spread pâté on it and top it with Dijon. I do this and try to hand it to him. But, not being able to see, I cannot put it in his fingers, and not being able to feel, he cannot grab it without cracking it in two, so after a few frustrating attempts, and much pâté lost in the effort, we hit upon the expediency of me holding the cracker in the direction of his face, whereupon he grasps my wrist and shoves the cracker (and sometimes my fingers) into his mouth.

We do this over and over and the gin helps us forget the unsanitary way in which I grip the knife and thrust it first into the pâté  and then into the mustard and sort of push lopsided toppings back onto the crackers with my fingers, which, nine times out of ten end up in contact with my dad’s mouth. And each time he grunts his approval in a closed-mouth yum-yum kind of way, I know I will never forget the way he let me help him –at least for a few minutes–enjoy one of his last tastes of the good life.

My Pitch Video and Application for the Holman Prize for Blind Ambition 2018

I learned about the Holman Prize from my Friend Laurie Rubin last year, but did not have the time, nor a clear project to pitch, but this year I was ready and waiting!

I managed to talk Alabaster into being my videographer, and we learned so much in the filming and editing of this little video, that I’m pleased to leak the possibility of some Alabaster Rhumb music videos coming soon… Speaking of Alabaster’s music, it is his song “Bird in a Tree,” that plays in the background of my Holman Pitch video, sped up and with a French horn taking the vocal line.

I also enlisted my long-time film collaborator, David Lowe, to help with the audio described intro sequence, but he went far beyond the call of duty by adding magic to our final cut, including somehow making our rather uninspired hill appear truly golden!

And without further delay, I urge you to watch, and like (the social media winner is guaranteed a spot in the final round of the competition), our 90-second Holman pitch video:

 

What is the Holman Prize?

The Holman Prize is the amazing brainchild of Lighthouse for the Blind and Visually Impaired in San Francisco, which was coincidentally the first blind organization I ever had anything to do with, as I grew up and started losing my vision in that city. For a little more on those early days of visual impairment, check out In the Beginning Were the Eye Doctors.

In fact, I even volunteered one summer at their Enchanted Hills Camp, which was partially destroyed in the recent California wildfires, so please consider a donation to that worthy summer camp for blind and visually impaired children and adults.

Last year was the first of this annual international competition, which awards up to $25,000 to each of three blind or visually impaired winners to help them make their dream projects come true. Here’s a short video about the 2017 winners:

The pitch video is the main component of the first round of the Holman Prize competition, which also includes a written application with short answers that helps to give context to the video, and introduce the candidate and her project.

So I thought I’d include some of my application answers here, just in case you also would like to have my pitch video contextualized!

Enter the basics of your project and give us any details that aren’t in your video pitch. Max 200 words.

Aromatica Poetica is my new magazine dedicated to the arts and sciences of smell. It is not especially for blind people, but, as a blind person connected in the community, I will encourage blind and visually impaired writers. Thus, the annual writing contest is vital to this project, which seeks to offer an alternative to sight-centric writing.

With the Holman Prize, I’ll be able to publish the first issue and have a launch party. I feel confident that after that initial issue, we’ll be self-sustaining and eventually profitable. The advertising possibilities are endless: fragrance, wine, spices, sweets, coffee, tea aromatherapy…

The trip component is inspired by James Holman, and will seek out strange new smells–from flowers and wine to volcanic rock and olive oil. It will provide the fodder for the feature story for the inaugural issue of Aromatica Poetica.

In the making of this pitch video, I’ve developed a healthy appreciation of audio description. I would have liked to provide more, but 90 seconds is not very long. For you blind judges out there, please know that I’m toasting you with a lovely-smelling glass of red wine at the end, and that accessibility is always on my mind.

Tell us a little about yourself: write a short bio, tell a funny story, tell us about your passions, or do whatever you like! We want to know who you are. 150 words.

I received my PhD from NYU in 18th century English Literature, then promptly turned around and wrote and produced two plays: about Helen Keller’s time on Vaudeville, and about the sexy history of the invention of braille.

As an actor, I’ve landed a national commercial as well as other smaller gigs. As a writer, I’ve written for O Magazine, just sold a story to Playboy, and have work in many less notorious literary and commercial publications. As a publisher, I’ll be able to encourage diverse voices and aesthetics.

Smell, “the fallen angel,” as Helen Keller put it, has become a passion of mine since metamorphosing from visually impaired to blind, and I want to share that passion. Smell needs vocabulary and great writing–fiction, nonfiction, poetry. The underdog sense can expand the world of blind and sighted alike, and Aromatica Poetica is here to help!

If you plan to travel, please enter those locations in a simple list.

France (Paris, Bordeaux, Grasse), Italy (Florence, Sicily/Mount Aetna), Greece (Athens), Bulgaria (Kazanlak/Valley of the Roses), Turkey (Istanbul).

Please tell about your visual impairment (100 words).

I have a cone rod dystrophy that started when I was ten, which has, very slowly, pushed me along the sight/blindness spectrum from normal sight to near complete blindness. Most of my life was spent as a visually impaired person, but in the past few years–perhaps 5 or six, I have considered myself a blind person, as I have no usable vision. These days, I can see an occasional chink of actual light in my far periphery, but other than that, it’s all kinds of pixelated snow fuzz with occasional hallucinations, courtesy Charles Bonnet Syndrome.

Ok, that’s it! What do you think? Before you decide, I suppose I should invite you to check out my competition

Cheers to all the blind ambition in the world!

Revisiting the Tremé By Way of ‘Treme’, #52essays2017

I’m a little late to the party, but then again I was sort of early too. I just started watching the HBO show treme, and I love it so much, I don’t allow myself to binge watch. I save it for a good ole romp on the treadmill—one episode a day, if I make it to the treadmill. The opening credits get me going every time.

But it was episode 5 of season 1 “Shame, Shame, Shame” that provoked me to write. Thanks to the great sound design, the second line scene—before the shooting—was viscerally what I remember my life in New Orleans being. It was so full of brass that you felt your head would blow off in the wind–the closest thing to a punk show I’ve experienced since my few punk shows back when I was a kid. But the shooting felt real too. Treme does a great job of depicting so much that is beautiful and scary and totally out of control and special about New Orleans.

My best friend Indigo and I moved to New Orleans in 1996, just two years after New Orleans infamously broke the record on murder. “Nov. 29, 1994, is the day the murder record was broken in New Orleans. There were 28 more murders before the year ended,” according to NOLA.com. I was vaguely aware of the dangers of the city that I bragged to my California friends was the closest thing I could get to a third world country and still be in the united states—and that was before Katrina and her aftermath that is depicted in Treme.

It would have been impossible to not notice that instead of goodnight or have a good one people said, “Be careful.” At the Circle K down the street from us, at the bars when you were leaving, at the corner store, everyone said, “Be careful.” Perhaps it was because we were two pretty naive white girls living in a predominantly black neighborhood on the other side of Ramparts from the French Quarter, but I think it was also a sign of the times.

I suppose I should mention that I can’t see a damn thing of the show, and my memories of New Orleans and the Tremé are of a time when I could see pretty well. I was visually impaired, so there wasn’t always a lot of detail, and I couldn’t read normal print, and I couldn’t recognize faces. But I could still see.

I could see our swimming pool with its hodgepodge of floaty toys and the banana trees that would grow before your very eyes. When Indigo and I first moved there, we just sat in that picture window smoking and saw those trees shoot up and sprout leaves and fruit. And I could see the crazy inhabitants of our little Shangri-La parade by: the strippers and the hookers and the punks and the gay gentrifiers and the boys next door (who were, like us, from California) and the French business guy.

And I could see the wacky architecture, eight apartments carved crazily out of two antebellum mansions and their carriage houses: ours was the downstairs ballroom-fronted apartment with two shoebox bedrooms stacked on top of each other in the back with odd vanity lightbulbs running from my room to Indigo’s above which she accessed with one of those iron spiral staircases that are made to go into tiny spaces, so common in Paris. And next door the boys lived in a five-story apartment that was just one room stacked on top of the other, starting with the kitchen and topped by a roof.

Our grand mansion was on the front side of the Tremé, if you think of the front as Esplanade, but on the backside if you think of the Tremé as the heart, which we did. Directly behind our pool was Little People’s, which was run by the family of Kermit Ruffins and it would burst with music every Wednesday night. You had to be careful upon entering, had to wait for the music to stop because the place was so small that the drums had to be set up right in front of the door.
And you’d go in and the place was packed and the horns were in your face and the beers were two dollars and the chicken necks were on the house and I just remember being there with a huge smile every time, thinking this is the real new Orleans, which seems to me to be the sometimes tongue in cheek sometimes painfully true motto of Treme.
If you’ve seen the show you know Kermit Ruffins is a fantastically fun entertainer and excellent trumpeter, but he was basically a staple in our lives when we were there. I can’t claim to have been a close personal friend, but we saw him play all the time, and he and other such legendary locals came to our ballroom apartment once or twice.

I couldn’t help but fall in love with the show Treme from the very first episode when Davis, who reminds me of 95% of my performer/musician friends—yes, I’m talking to you!–sees Elvis Costello, who appears as himself in the show, and tries to get Kermit to go up and introduce himself because it would be so great for his career, and all that, and he’s so hopping frustrated that he finally says something like, “Kermit, you’re telling me all you wanna do is get high, play some trumpet and barbecue in New Orleans for the rest of your life?” And of course Kermit’s like, “yep, that sounds pretty good.” And everyone laughs at Davis’s expense.

Well, some part of me agrees with Kermit and wishes I would have stayed in New Orleans at 1260 Esplanade, on the backside of the Tremé, and continued my simple Big Easy life. I worked at Degas House, the ancestral home of the painter Degas’s creole relatives turned bed and breakfast. I was its breakfast chef and every morning I rode my blue and yellow banana-seat bike up Esplanade and back. I made egg puffs and quiches and muffins for tourists. It was an adorable job, made odd by my visual impairment. And I almost didn’t go to New York, to grad school, because of that job and our cute little band, an all-girl punk band called “Down There,” with me on drums and Indigo as our front woman.

Recently I’ve been reading guidebooks and doing research for a story I’m working on, which is what led me to the show. It’s all brought my nostalgia for the Tremé and New Orleans to the foreground, but of course there’s the fact that I was in my twenties and still had vision, so my nostalgia is a little mixed up with those things too, which makes going back even more impossible for me than most. That’s ok, I listen to Treme.

I Have A Fellow Feeling For Trump. He Seems As Blind As I Am, Essay 27 of #52essays2017

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*

Touching Egypt: Art Accessibility

*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.

Godin presents crushed lockers at the Whitney MuseumBack 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, Godin experiences art accessibility at The Metfrequently 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!

Bobst Library, the Education of the Blind, and The Buffoon of Saint-Ovide, Essay 21 of #52essays2017

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.

The Buffoon of Saint-Ovide

Hospice Quinze-Vingts, 1772

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.

 

*This is essay 21 of #52essays2017. Read #20 From Derrida to Diderot: The Philosophe’s Dream to learn more about the history of the education of the blind and The Spectator & the Blind Man*