The Brain-Smashing, Pity-Bashing Art of Blind Punks

“You must sing like an angel,” a woman said to me as I prepared to go onstage with my “Avant Accordion Brain Smash” act in a Brooklyn warehouse performance space. She either did not notice my hand-sewn black bustier, or decided that my white cane rendered all the badassery surrounding it null. When I began bellowing about some murderous renaissance dude with the refrain, “He left the people stunned and satisfied,” she got the message: I was not that kind of blind person.

Although I know more than my fair share of angelic blind singers with perfect pitch (four, to be exact!), this is not about them. This is about blind punks—slamming and screaming, defying authority, getting into trouble, getting drunk, getting angry, getting even. This is about using the white cane to (metaphorically) smash people’s brains.

Punk does not protect one from physical injuries, but it does a great job of protecting one from the psychological hurt arising from pity.

While my act with accordion and loop pedal was not punk in the strict sense of the musical genre, it represents my life-long obsession with the aesthetics of anti-establishment ugliness, with pushing the limits of tolerable. In losing my vision over the course of decades, my ability to move through life with a confident, boisterous stride constricted. I felt blindness creep into my posture, my presence. It is sometimes hard not to cringe when your default mode of getting about is pinball. I am not always strong enough to embrace bashing as a way of life, but when I do, I feel the pity others may feel for me shatter.

Avant Accordion Brain Smash at Carnivale in Brooklyn. Godin lying down with mic, loop pedal and accordion.

“I can honestly trace punk through everything I do whether I want to admit it or not!” blind sound artist, performer, musician, and disability advocate Andy Slater told me in an email leading up to our recent phone conversation. He sent me recordings of “nineteen-year-old Andy screaming like an eleven-year-old girl” in a band called Jarts (named for the lawn darts banned in the ’80s for impaling children), in such heart-pumping ditties as “By the Way, I Fucked Your Mom Today.”

Andy Slater has since parlayed his youthful screaming rants—he couldn’t read his lyrics, so he’d make shit up and no one could understand what he was saying anyway—into sound art, which, even if exhibited and performed in such established venues as the Museum of Contemporary Art Chicago, the Contemporary Jewish Museum in San Francisco, and the Ian Potter Museum of Art in Melbourne, is less distinct from his early punk as one might imagine. His most recent field-recording project Unseen Reheard uses “the sounds of modern, antiquated, & experimental accessibility technology, echolocation, and spatial recordings of his white-tipped cane.”

Andy lives in Chicago and I spoke to him over the phone about punk and art and the weird, unstable stance of losing vision over decades. “The first time I remember distrusting authority,” he told me “was when I was ten.” He loved space and astronomy—what kid doesn’t?—but he even “had the National Geographic Atlas of Our Universe book, which is this huge coffee table size book of the universe, and I fucking loved it.”

So he was super excited to visit the planetarium with his class: But the powers that be decided at the last minute that he could not go: “Oh Andy, we don’t have a chaperone for you and you can’t see in the dark. You’re gonna stay here.”

Instead of putting him in the library or with another class or letting him go home, they put him in a nine by twelve room—“Prison-size shit”—and gave him an encyclopedia and paper and “had the fucking gall to say, ‘Why don’t you write a report on space?’”

Ten is a striking age for a lot of kids, I think. It is the year that many of us begin shaping ourselves in accordance with, or in opposition to, the authorities that dictate our world. When those authorities tell lies and manufacture excuses for their own inabilities, their own unwillingness to admit ignorance or ineptitude, mistrust bubbles up from the depths of our yearning.

For me, it was the men in white coats that covered over their impotence with silly non-diagnoses that caused me to think twice about their trappings of knowledge. They didn’t know why I couldn’t see the blackboard from the back of the classroom and so they started making shit up: “Her eyes are growing too fast for her body,” or perhaps it was that “her body is growing too fast for her eyes.”

And the greater their power, the less equipped to deal with ignorance. The head of ophthalmology at the Letterman Army Hospital in the now-decommissioned Presidio of San Francisco scolded my mother: “Maybe she can’t see because you’ve been taking her to so many eye doctors.” It was out of frustration at not understanding the problem, of not being able to help or assert his deep knowledge of the eye, but it taught me quick that people in authority have fragile egos. And thus the men (they were all men back then, it seemed) in white coats ushered me into a world of distrust. Protective of their superior positions in the world, their superior knowledge of the world, when their façade cracked it was not pretty.

This was the early eighties in San Francisco, where the Dead Kennedys were pissing people off with thrashing satires such as “Holiday in Cambodia” and “Too Drunk to Fuck.”

Further south in a bedroom community ripe for instilling mistrust in a certain kind of kid with an eye for inconsistencies and falseness in the American Dream, Agent Orange was blending punk and hardcore with surf guitar. They released Living in Darkness the same year I received the diagnosis of degenerative retinal disease. They were my favorite. I would chant their punk anthems “Bloodstains,” “Everything Turns Grey,” “Living in Darkness,” over and over in my room in my mom’s apartment in the Outer Richmond—the far west of San Francisco, just a few blocks from where Hunter S. Thompson set up his office in the Seal Rock Inn (a family style motel), in which he wrote his author’s note to Fear and Loathing on the Campaign Trail ’72: “Dawn is coming up in San Francisco now: 6:09 a.m. I can hear the rumble of early morning buses under my window at the Seal Rock Inn . . . out here at the far end of Geary Street: this is the end of the line, for buses and everything else, the western edge of America.”

Thompson’s disillusionment with the American dream—that it stops in a spluttering of buses and barking seals, prophesied the California punk scene, distinct from the East Coast varietal. Less glamorous perhaps and more overtly, pointedly political.

In ’85 or so, my friend and I were supposed to see Agent Orange at The Farm (a real urban farm by day and punk venue by night), but the show was mysteriously canceled. We were so young, we may have been crushed—physically, not just metaphorically, as we were—if we’d gone, but we stayed in her room and did acid instead.

LSD was a major part of my growing up. I sometimes wonder what my brain would be like if it hadn’t spent so many hours sizzling just like that iconic egg in butter: “this is your brain on drugs” ad of the ’80s. I will never know, because, during my early teenage years, like fourteen and fifteen, every Friday was a FryDay.

At no point in my youth did I consider not doing drugs. I also did not stop to consider why I found brightly colored hair—green and blue and pink—shaped into mohawks or liberty spikes so appealing. These days brightly colored hair is everywhere (as are tattoos), but not so back then. It was ugly and beautiful and raw and mixed up with some honest anger and anxiety.

Perhaps the most cliché moment of my teenage years was being stoned and listening to Suicidal Tendencies’ “Institutionalized.” And my mom walked in and said, “what’s wrong with you?” and I said, “I’m all right, mom, just get me a Pepsi.” Just kidding. I didn’t ask for a soda as the kid in the song does, but my mom saw right away that something was wrong and said, “You’re on drugs!” She tells me to this very day that I gave her a smile that made her blood run cold. I was not institutionalized, but I did get sent to a drug counselor and marked “unsafe to self.”

And all this while the eyes were getting worse. I found it hard to read and couldn’t do well in school. I pretended to not give a damn. And the drugs and the punk and the anger and the lashing out was part of the feeling that I was going blind and couldn’t do a thing about it. What I knew for certain was that I would never use a white cane. I saw blindness as a terrible end, but I was young enough that aging was just as terrible. I liked to say, “I’m gonna die before I’m thirty.”

Needless to say, I did not.

Slack Jaw by Jim Knipfel book cover.

Instead, age brought a cringing and a fear of being watched—a paranoia—that shunted aside the rebel. Perhaps being a girl was part of it. I was afraid to bash my face. Once I did run drunkenly into a tree protector on the way to a school dance, and was quite proud of my near miss—the bloody scratch was just under my right eye, and I proceeded to make out with some boy despite or perhaps because of the gash. But that was the exception.

Despite the inner anti-authority workings of my core, the default became a kind of shriveling shame.

I trailed my friends in the record shops, squinting at covers, trying to recognize a name I wanted. At first difficult and then impossible. I could only read the letters if they were very big and clear. But when I saw a name I knew—a Black Flag or Skinny Puppy—I’d buy it. Album covers still appear as inchoate square landscapes in my mind’s eye. I can still see jagged red letters or an x-ray luminous fist on black background.

The lack of the printed word made it hard to keep up. I could not read zines and music rags. I could not follow the anti-establishment underground with its bits of paper photocopied with wacky font or even more established rags like the Bay Guardian or Spin—they simply were not accessible to me. Books on tape were extremely limited and braille books even more so. I followed accessibility into the established and mainstream. It was not where I wanted to go, but where I was allowed.

“Tap and Roll” from Unseen Reheard by Andy Slater

We blind punks did not know each other growing up, but Andy and I and a handful of others have been able to find each other through the wonderful world of the digital—the much-maligned Facebook and ebooks have been very good for blind people. We were all stuttering down similar paths, all with degenerative eye disease, which caused us to spend much of our lives as visually impaired people before going blind—not that this is a requirement!—but it seems not unrelated.

In ’90s Vancouver, for example, another retinal degenerative blind guy Ryan Knighton was forcing his bad eyes into mosh pits. “You might think an appetite for something called a night-club would be a bad idea for someone called night blind,” he writes in his 2006 memoir Cockeyed. “You would be right. Equally wise would be me joining a gun club. Nevertheless, to this day I owe a debt to punk rock. Its culture helped me become as blind as I was but couldn’t admit to being.”

I followed accessibility into the established and mainstream. It was not where I wanted to go, but where I was allowed.

Like basically every going-blind person I know, Knighton steadfastly rejected the white cane long after it was wise to do so, and his crashing around—the daily humdrum of visual impairment—was covered over by the chaos of the scene. “The culture camouflaged my inability to cooperate with other bodies. In growing blindness I became, oddly enough, safer and more like the postpunk scenesters around me than I was like my peers at school. Booze helped. Everybody was bent, legless, gassed, rat-arsed, and every other word for blind drunk. Bumping into people was acceptable, even expected, and I was practiced at bashing into folks on a regular basis, whether I was in my cups or just spilling them.”

But before Andy, and Ryan and me, there was Slackjaw—Jim Knipfel, misfit stepfather to all us blind punks.

In Green Bay Wisconsin, Jim Knipfel was starting his path down blindness and rejecting mediocrity. He hit fifteen in 1980, and “despite a loving family and a stable home life,” he wrote in his 1999 memoir Slackjaw, “as I entered my middle teens things started to go very wrong. Not just with my eyes, which were noticeably worse, but inside my head as well. I became a grim and lonely youth, who spoke little and had few friends . . . I became filled with the contempt and hatred for the world and humanity so common among bright young boys who read too much and listen to punk rock.”

Later as a disenchanted philosophy major at University of Wisconsin, Madison, Jim met ne’er-do-well pal Grinch and, after their political Nihilist Workers’ Party blew up, after Jim was dubbed Slackjaw, after the weeks of dizziness from walking into a lamppost and slamming his head, they founded the Pain Amplifiers. Their grand finale was opening for the Mentors (a band not widely known until, during the Parents Music Resource Center hearings in the mid-eighties, Tipper Gore brought them instant notoriety by citing and reciting their lyrics as perfect examples of the kind of garbage that children needed to be protected from.”

The Pain Amplifiers had, by the time of that last show, worked out some songs like “Superbowl Sunday,” “Blood-Sucking Freaks,” and “Thuggery and Buggery.” “All too long,” writes Jim, “all intolerable, most of them based on found texts.”

Andy told me that during Jim’s recent visit to Chicago, where Grinch also now lives, he recorded some of their old tunes because they never recorded. I told Andy he needs to get me those tracks when he finishes mixing, and he promised he will.

Down There featuring Godin on drums looking a bit aloof in her red slip at Checkpoint Charlie’s in New Orleans with her best friend Indigo Verton as lead singer. Photo by Jason Quinn.

I was in New Orleans when I founded my first band—an all-girl punk band called Down There. It was short-lived but loud and obnoxious. A friend said, “you guys are kind of good and kind of suck, and all awesome!”

Yet, I could not get over the self-consciousness I felt on stage. I did not use a cane or a dog. I did not get help from my bandmates. I felt discomforted by the loudness in unfamiliar places. I was shy about my awkwardness in these dark places.

I felt similarly when I founded my second band in NYC when I was already in grad school. Though I was better able to articulate my needs to my bandmates, I never felt comfortable. The fear of looking incapable or awkward was too engrained by then.

We were Gutter & Spine, a little bit country, a little bit punk, and all nerdy—the gutter and the spine being parts of a book. I played drums and shouted punked-out interpretations of the Renaissance literature I was reading: “Sludge,” a reworking of a Mary Wroth poem, “Dorca,” a retelling of a brutal Machiavellian anecdote, and “Ode to a Motherfucker,” which was, I believe, inspired by some Shakespearean sonnet. So yeah, I should have felt free to be loud and obnoxious and brain-smashing, but instead I felt blind and awkward, pinned to the wall by the gaze of the sighted audience. I wish I would have had my cane and said, “fuck it.” It surely would have made life easier.

In all the stories and memoirs of those in my age group going blind slowly, acquiescing to the stigmatized white cane is always pushed off until danger threatens or worse. For Andy, a car had to hit him to make him pull the cane out of the bag, and use it full time. Since then, it’s become a catalyst for art. The sound of its tap banging describes the audible space, which he records, mixes, and plays back.

In 2018, he was invited to Australia to record the sounds of his white cane slamming around an old, abandoned jail outside of Melbourne, Australia. Old Castlemaine Gaol was built as a kind of audio panopticon. Although the guards could not see into the individual cells, they could hear every whisper. The inmates were not to speak to one another. The inmates often went to the gallows. The inmates’ voices and movements were amplified, then squashed. It is powerful to hear Andy slicing through the dark confinement with the stigmatic white cane.

Paranoia of the sighted gaze is my most imprisoning disability. I feel those sighted eyeballs like the inmate of the panopticon prison. But I believe there is a way to turn my own discomfort against the panopticon of the sighted gaze. Or rather, there are ways. Not conforming and not giving a damn about what the sighted world thinks about my abilities and disabilities. In fact, using that ubiquitous judgey gaze to disarm its power, which is why Moses, my cane, figures in so many photos of me these days. Embracing the stigma and using it as a weapon feels punk.

While training with my most recent mobility instructor in Denver, I was meant to cross a fairly major four-lane street. I had the light, but my mobility instructor gave me the heads-up that a car had overstepped its bounds and pushed into the crosswalk. When I hit the car with Moses, instead of stepping aside quietly, I continued along its contour, banging as I went. I heard some teenage boys laugh heartily along with my instructor, who told me after the crossing that the woman in the car looked horrified. Hopefully, she will not overstep in front of a blind person again.

In 2019, Andy Slater and two fellow blind sound artists put up a performance installation at the Chicago Art Institute involving a cacophony of disabled voices called “Is It Cool That We’re Here?” The intelligibility of each voice surfaces out of the jumbled, pitch-shifted recorded and electronic soup, and then fades back under. One memorable soundbite seems to be addressed to a museum guard: “Are you afraid that my cane is going to knock something over?”

“That performance was totally punk and totally radical because the whole thing was a critique of museums and art,” says Andy. and it was performed in what used to be the Chicago Stock Exchange, a huge marble room in a building containing amazing works of art. “And they never ever have anything to do with sound.”

This lack of sound art in museums is one thing Andy addresses in his SOVISA (Society Of Visually Impaired Sound Artists) Manifesto: We need “to get more sound art into these places so that blind people don’t need to have a dictated experience.”

When I asked him my final, loaded question “does punk fight pity?” I received a few seconds of wind sound effect like a small gust blowing through an empty hall. Then, “So I think that I can answer that. In my experience, taking a punk aesthetic or being punk about something controls the narrative. So there. Is. No. pity.”

*For more on my thoughts about blind punks, check out my interview with the CBC’s Tapestry: How Punk Rock Helped One Woman Find Power in Her Blindness

*This essay was first published last fall at Catapult in A Blind Writer’s Notebook.

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.