Looking at Ebooks & Accessibility With 20/20 Vision in 2020

One definition of legal blindness is having a visual acuity that is best corrected to only 20/200. That means that even wearing glasses, a person can see no better than 20/200 using the standard eye chart. It also means that a person who is legally blind may walk around without a white cane or guide dog, but nonetheless cannot read standard-size  print. According to the CDC, more than 3.4 million (3%) Americans aged 40 years and older are either legally blind or low-vision, and in many of these cases, reading traditional physical books with their eyes is no longer an option.

“My mother/father/uncle/aunt is legally blind , and they’re depressed because they can’t read anymore,” is possibly the most common thing random strangers say to me. Because I’m blind, they want advice, sometimes, but most often they want me to commiserate somehow. They want me to tell them how horrible life is for their loved one now, but I won’t do that because I have technology, and technology has been pretty great for blind people.

In particular, book accessibility is just incredible compared to what it used to be. Braille, since it’s invention in 1829 by Louis Braille, was revolutionary, allowing blind people to read and write for the first time in history. However, producing braille has always been very expensive. I lost the ability to read print in the mid-eighties when I was about 15, and although I tried to learn braille, I was deterred by the dearth of books available in braille.

Enter the electronic braille display. It’s a nifty device that can be connected to your computer or smart phone by wire or wirelessly using Blu Tooth, and translates electronic text into braille—usually twenty or forty cells of refreshable braille that you can scroll through and read with your fingers as the little pins pop up and down in the correct configurations. Suddenly, now that pretty much every book published is available as an ebook (without the hyphen please, like email), I can read the latest release just as soon as my sighted companions. So yes, the much reviled ebook is accessible to blind readers. And unlike the adored audiobook, the ebook is also accessible to deafblind people, such as author Haben Girma, whose 2019 memoire describes how electronic braille helped her not only finish her Harvard law degree but also to communicate with fellow students in noisy social situations.

For many years, I relied on books on tape from non-profit and government organizations. There were so many reasons to be grateful for these audiobooks as they granted me access to school textbooks and for-fun novels. However, audiobooks take a lot of time and money to produce, even when they are relying on volunteer readers. The books on tape of my high-school, college and graduate-school years were not the slick productions that are so easily downloaded today. They were indifferently listenable and slow to arrive. They came by mail in unsexy plastic blue boxes, and  oftentimes I had to wait months, years,  or forever to get ahold of a book that my sighted friends were reading and talking about.

Before braille and audiobooks, there was the wonderful technology of spectacles—invented in Italy around the 13th century. Judging from the fact that all my newly middle-aged sighted friends suddenly need reading glasses, I’m guessing there were a lot of ancient and medieval scholars crying over their inaccessible books.

Thus, it is confusing to me why people—particularly older people are so mistrustful of technology. Technology has always allowed us to extend our working life beyond the years nature (and genetics) intended. Ebooks are a perfect example of how technology can be immensely helpful and yet widely despised.

I am on many bookish email lists (such as NY Times Books Briefing), which I read using my text-to-speech software on my computer or iPhone. The joy I feel at being able to gain immediate access to  items on, say, “The 10 Best Books of 2019” is immeasurable. Before the ubiquity of ebooks, It simply was not possible for me to be so current with books without hiring a legion of personal readers.

I’m still working on my braille skills with my relatively new (and very expensive) display. But now that the books are available I can work on it daily. I recently finished Patti Smith’s 2019  dreamscaped memoir, Year of the Monkey, mostly using my braille display, but switched to my ears (using text-to-speech) when my newbie fingers got numb or when I was eating.

This leads me to an important point regarding the much-maligned ebook: a visually impaired reader can enlarge the print and read with their eyes; a blind reader who does not know braille can listen using text-to-speech software; and a braille reader can use their fingers  with a braille display.

I am not saying that ebooks should displace physical books with their wonderful smell and heft. I dream of having a braille book library of my own someday!  I also dream of owning my own house with a room big enough to house it. But until that wonderful day when I have lots of money and square footage, I am thankful to have access to electronic books. In fact, I would argue that the “cheerleaders” for ebooks a few years back who urged a complete switch from ink and paper to digital hurt my predicament as a reader who relies on digital, by assuming that all readers would love to hold their entire library in one hand.

This idea has understandably suffered a backlash. From this angry Guardian opinion piece railing against the techno-dazzled, to Bill Henderson’s refusal to publish his influential Pushcart Anthology digitally, to ebook-hating authors such as Jonathan Franzen, physical book fetishizers deny the validity and even the reality of digital books as if the printed letters were the thing and not the content and ideas the letters point to.

I am here to say that for me and millions of other print-blind readers, physical print books do not exist as anything more real than a doorstop, while digital books are real, readable books. If you don’t believe me, just pull an Oedipus–poke out your eyeballs–and tell me about the reality of your impressive print-and-ink library.

Book lovers come with all kinds of abilities and disabilities, all kinds of resources and lack thereof. We do not all have rooms for shelves and shelves of books or live next to a world-class library. Many of us have uncorrectable vision loss. Ebooks and digital libraries have opened up countless books for me, and they might very well keep them open for you, when you lose the ability to read with your eyes.

If you, for example,  become print-blind alongside millions of Americans with age-related macular degeneration (a leading cause of visual impairment in those over 60), I hope you will remember my words: Ebooks are accessible books. Get over your technophobia and read.

Tap. Tap. Tap. Joyce’s Blind Stripling in honor of White Cane Safety Day

*Parts of This introductory essay first appeared for White Cane Safety Day 2018 at Catapult*

“God’s curse on you,” said the blind stripling sourly to the oblivious passerby who’d knocked his cane, “whoever you are! You’re blinder nor I am, you bitch’s bastard!”

The blind stripling is one of the hundreds of Dublin characters who crisscross Ulysses. His unfortunate encounter with Cashel Farrell comes in The Wandering Rocks episode, but Joyce apparently felt strongly enough about the blind stripling’s curse to repeat it in The Sirens episode, where we learn that the young blind man is a piano tuner and a player as well. He’d left his tuning fork at the Ormond, and the barmaid/siren tells Mr. Dedalus, “I never heard such an exquisite player.” Then she offers pity, “So sad to look at his face,” and we hear the echo of the blind stripling’s curse echoed as if by a disembodied voice.

“God’s curse on bitch’s bastard.”

I’m pretty sure every blind person using a cane can relate to the blind stripling’s sourness.

In San Francisco an oblivious girl passing perpendicularly in front of us kicked my cane aside and I shouted, “Excuse you!” Her response was a giggle. If I’d not been walking with Alabaster, the move would have totally thrown me off course.

And a horror story from a blind New York City friend who, while descending subway stairs, was cut off by some asshole, whose rush to get to his destination was more important than everyone else’s. He crushed her cane, leaving her with a useless broken thing. He did not even stop to notice let alone apologize. Luckily, there were others more kind who helped my friend to get somewhere safe.

I cannot help but think that Joyce, suffering from eye troubles throughout his adult life, experienced both the carelessness of those who, like Farrell, will knock your cane without so much as a glance, and the kindness of those who, like Leopold Bloom, are always looking to help. “You’re in Dawson Street, Mr. Bloom said. Molesworth street is opposite. Do you want to cross? There’s nothing in the way.”

In The Most Dangerous Book, Kevin Birmingham tells us, “By the time he reached his late forties, Joyce was already an old man. The ashplant cane that he had used for swagger as a young bachelor in Dublin became a blind man’s cane in Paris. Strangers helped him cross the street, and he bumped into furniture as he navigated through his own apartment.”

Although this refers to a time after he finished Ulysses, Joyce began having eye trouble long before. Bouts of iritis (a swelling of his iris) began in 1907, and through the years, despite and sometimes because of the many surgeries, Joyce experienced periods of partial or full blindness. So it is no surprise that both his main characters consider life without sight. After his encounter with the blind stripling, Bloom “slid his hand between his waistcoat and trousers and, pulling aside his shirt gently, felt a slack fold of his belly. But I know it’s whitey yellow. Want to try in the dark to see.”

This yearning to see in the dark echoes Stephen Dedalus’ attempts to get around “the ineluctable modality of the visible.” On the beach he closed his eyes and used his ashplant as a blind man’s cane. “I am getting on nicely in the dark. My ash sword hangs at my side. Tap with it: they do.”

In honor of White Cane Safety Day (October 15), I offer a tasty bit from Joyce’s Ulysses that features the blind stripling/piano tuner, but first, here’s a brief history of White Cane Safety Day…

White Cane Safety Day

It is commonplace to think of the ancient blind man with a staff, but when did the staff turn into the white cane? This was my question after reading A Sense of the World, about James Holman a blind Victorian who was known as “the blind traveler,” because of his solo trips around the world. His biographer, Jason Roberts, tells us that Holman used his gentleman’s walking stick to echolocate. Instead of sweeping a slender stick from side to side, as a blind person today is trained to do, Holman would use the tip of his walking stick to indicate the depth and dimension of his surroundings: “the metal ferrule can be easily bounced up and down, producing an authoritative series of taps.”

This use of the cane as sonic, as well as tactile, tool is suggested in Ulysses as well, where the repeated “Tap. Tap. Tap. Tap,” of the blind stripling’s cane, seems to indicate that the sound was emblematic of the blind person, unlike today, where it is the look of the thing that seems to signal difference.

In fact, it was not until 1921 that the cane was given its iconic color. As the story goes, James Biggs, a blinded photographer, hit upon the idea of painting his cane white in order to be better seen in his Bristol streets. It makes sense to me that the mental eye of the former visual artist would recognize the importance of contrast. From England the idea spread to the continent and then to America, where the Lyon’s Clubs began giving white canes to blind people throughout the ’30’s.

Even so, the method of sweeping the long cane from side to side did not become the norm until blinded vets began returning from World War II. According to the Perkins School for the Blind, “The standard technique for using a white cane was pioneered in 1944 by Richard E. Hoover, a World War II veteran rehabilitation specialist. His technique of holding a long cane in the center of the body and swinging it back and forth before each step to detect obstacles is still called the ‘Hoover Method.’”

When you are fitted out for a cane, ordinarily you will get one that, when it stands upright, is about sternum height or taller.

When you are walking, the cane’s top end will be held in your dominant hand at about the level of your solar plexus and will sweep to the right or left in opposition to your step. The cane is meant to tell you what’s happening at a distance of about two paces.

When you sweep left, your right foot steps out, when you sweep right, your left foot steps out.

Some mobility instructors teach you to use a very low arc with a light tap at each end, and I have found this technique helpful when dealing with broken sidewalk or cobblestones, but mostly the cane should be in contact with the ground so that it can tell you when things like steps or curbs are coming, though there is a lot that must be done with your hearing as well. My latest mobility instructor tells me that I have great skills, but I am not the greatest at being brave about using them.

In the long years of my visual impairment, I liked to walk and think, and so it is not natural for me to think so hard about walking. I can keep up my vigilance for about twenty minutes and then I start walking out into traffic. But I’ve known many blind people who rock the white cane.

In 1964, President Johnson proclaimed October 15 to be White Cane Safety Day, and it has been celebrated to a lessor or greater extent ever since. “The Presidential proclamation emphasized the significance of the use of the white cane as both a tool and as a visible symbol,” writes the Tennessee Council of the Blind. “In the first White Cane Proclamation President Johnson commended blind people for the growing spirit of independence and the increased determination to be self-reliant and dignified.”

The Blind Stripling

*This comes from the final pages of The Sirens episode in which the tap tapping of the blind stripling/piano tuner interweaves with the flirting of the bar girls and Leopold Bloom’s wanderings, ending with an explosion of laughter and, um, wind!*

Gassy thing that cider: binding too. Wait. Postoffice near Reuben J’s one and eightpence too. Get shut of it. Dodge round by Greek street. Wish I hadn’t promised to meet. Freer in air. Music. Gets on your nerves. Beerpull. Her hand that rocks the cradle rules the. Ben Howth. That rules the world.

Far. Far. Far. Far.

Tap. Tap. Tap. Tap.

Up the quay went Lionelleopold, naughty Henry with letter for Mady, with sweets of sin with frillies for Raoul with met him pike hoses went Poldy on.

Tap blind walked tapping by the tap the curbstone tapping, tap by tap.

Cowley, he stuns himself with it: kind of drunkenness. Better give way only half way the way of a man with a maid. Instance enthusiasts. All ears. Not lose a demisemiquaver. Eyes shut. Head nodding in time. Dotty. You daren’t budge. Thinking strictly prohibited. Always talking shop. Fiddlefaddle about notes.

All a kind of attempt to talk. Unpleasant when it stops because you never know exac. Organ in Gardiner street. Old Glynn fifty quid a year. Queer up there in the cockloft, alone, with stops and locks and keys. Seated all day at the organ. Maunder on for hours, talking to himself or the other fellow blowing the bellows. Growl angry, then shriek cursing (want to have wadding or something in his no don’t she cried), then all of a soft sudden wee little wee little pipy wind.

Pwee! A wee little wind piped eeee. In Bloom’s little wee.

—Was he? Mr Dedalus said, returning with fetched pipe. I was with him this morning at poor little Paddy Dignam’s…

—Ay, the Lord have mercy on him.

—By the bye there’s a tuningfork in there on the…

Tap. Tap. Tap. Tap.

—The wife has a fine voice. Or had. What? Lidwell asked.

—O, that must be the tuner, Lydia said to Simonlionel first I saw, forgot it when he was here.

Blind he was she told George Lidwell second I saw. And played so exquisitely, treat to hear. Exquisite contrast: bronzelid, minagold.

—Shout! Ben Dollard shouted, pouring. Sing out!

—’lldo! cried Father Cowley.

Rrrrrr.

I feel I want…

Tap. Tap. Tap. Tap. Tap

—Very, Mr Dedalus said, staring hard at a headless sardine.

Under the sandwichbell lay on a bier of bread one last, one lonely, last sardine of summer. Bloom alone.

—Very, he stared. The lower register, for choice.

Tap. Tap. Tap. Tap. Tap. Tap. Tap. Tap.

Bloom went by Barry’s. Wish I could. Wait. That wonderworker if I had. Twentyfour solicitors in that one house. Counted them. Litigation. Love one another. Piles of parchment. Messrs Pick and Pocket have power of attorney. Goulding, Collis, Ward.

But for example the chap that wallops the big drum. His vocation: Mickey Rooney’s band. Wonder how it first struck him. Sitting at home after pig’s cheek and cabbage nursing it in the armchair. Rehearsing his band part. Pom. Pompedy. Jolly for the wife. Asses’ skins. Welt them through life, then wallop after death. Pom. Wallop. Seems to be what you call yashmak or I mean kismet. Fate.

Tap. Tap. A stripling, blind, with a tapping cane came taptaptapping by Daly’s window where a mermaid hair all streaming (but he couldn’t see) blew whiffs of a mermaid (blind couldn’t), mermaid, coolest whiff of all.

Instruments. A blade of grass, shell of her hands, then blow. Even comb and tissuepaper you can knock a tune out of. Molly in her shift in Lombard street west, hair down. I suppose each kind of trade made its own, don’t you see? Hunter with a horn. Haw. Have you the? Cloche. Sonnez la. Shepherd his pipe. Pwee little wee. Policeman a whistle. Locks and keys! Sweep! Four o’clock’s all’s well! Sleep! All is lost now. Drum? Pompedy. Wait. I know. Towncrier, bumbailiff. Long John. Waken the dead. Pom. Dignam. Poor little nominedomine. Pom. It is music. I mean of course it’s all pom pom pom very much what they call da capo. Still you can hear. As we march, we march along, march along. Pom.

I must really. Fff. Now if I did that at a banquet. Just a question of custom shah of Persia. Breathe a prayer, drop a tear. All the same he must have been a bit of a natural not to see it was a yeoman cap. Muffled up. Wonder who was that chap at the grave in the brown macin. O, the whore of the lane!

A frowsy whore with black straw sailor hat askew came glazily in the day along the quay towards Mr Bloom. When first he saw that form endearing? Yes, it is. I feel so lonely. Wet night in the lane. Horn. Who had the? Heehaw shesaw. Off her beat here. What is she? Hope she. Psst! Any chance of your wash. Knew Molly. Had me decked. Stout lady does be with you in the brown costume. Put you off your stroke, that. Appointment we made knowing we’d never, well hardly ever. Too dear too near to home sweet home. Sees me, does she? Looks a fright in the day. Face like dip. Damn her. O, well, she has to live like the rest. Look in here.

In Lionel Marks’s antique saleshop window haughty Henry Lionel Leopold dear Henry Flower earnestly Mr Leopold Bloom envisaged battered candlesticks melodeon oozing maggoty blowbags. Bargain: six bob. Might learn to play. Cheap. Let her pass. Course everything is dear if you don’t want it. That’s what good salesman is. Make you buy what he wants to sell. Chap sold me the Swedish razor he shaved me with. Wanted to charge me for the edge he gave it. She’s passing now. Six bob.

Must be the cider or perhaps the burgund.

Near bronze from anear near gold from afar they chinked their clinking glasses all, brighteyed and gallant, before bronze Lydia’s tempting last rose of summer, rose of Castile. First Lid, De, Cow, Ker, Doll, a fifth: Lidwell, Si Dedalus, Bob Cowley, Kernan and big Ben Dollard.

Tap. A youth entered a lonely Ormond hall.

Bloom viewed a gallant pictured hero in Lionel Marks’s window. Robert Emmet’s last words. Seven last words. Of Meyerbeer that is.

—True men like you men.

—Ay, ay, Ben.

—Will lift your glass with us.

They lifted.

Tschink. Tschunk.

Tip. An unseeing stripling stood in the door. He saw not bronze. He saw not gold. Nor Ben nor Bob nor Tom nor Si nor George nor tanks nor Richie nor Pat. Hee hee hee hee. He did not see.

Seabloom, greaseabloom viewed last words. Softly. When my country takes her place among.

Prrprr.

Must be the bur.

Fff! Oo. Rrpr.

Nations of the earth. No-one behind. She’s passed. Then and not till then. Tram kran kran kran. Good oppor. Coming. Krandlkrankran. I’m sure it’s the burgund. Yes. One, two. Let my epitaph be. Kraaaaaa. Written. I have.

Pprrpffrrppffff.

Done.

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*