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.

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.

From Derrida to Diderot: The Philosophe’s Dream, Essay 20 of #52essays2017

Thinking back to where The Spectator & the Blind Man all started–and by all I mean dissertation, stage production, literary endeavor–it was probably with Diderot. And I believe I discovered Diderot in the pages of Derrida:

Diderot by Louis-Michel vanLoo, 1767.“I write without seeing….. This is the first time I have ever written in the dark . . . not knowing whether I am indeed forming letters. Wherever there will be nothing, read that I love you.”

-Diderot, Letter to Sophie Volland, June 10, 1759

I first encountered this quote in a book called Memoirs of the Blind, a perhaps ironically beautifully visual book about blindness and the self-portrait by Jacques Derrida, written for an exhibition that he curated at the Louvre.

Denis Diderot, one of my all-time favorite dead white guy writers, would definitely be at my fantasy dinner table for witty repartee and bon vivantism. As I’ve now surely quoted a million times and cannot even remember where I originally read it, he died reaching for the cherry compote (the dessert), that is, he died wanting more of the good stuff.

Encyclopedie de D'Alembert et Diderot Premiere Page.Diderot is probably most famous as one of the editors and main contributors to the Encyclopédie (1751-66), a work that flouted notions of high and low disciplines by putting Christianity alongside Chemistry , Farm Laborer alongside Poet.

But even before that great endeavor of promoting equality, an endeavor that often seems to sing the early song of revolution, Diderot was a young man with man of letters stars in his eyes and he wrote a book inspired by the thoughts of the great Voltaire and other early luminaries of what would come to be known as the Siècle de Lumière. The Age of Enlightenment is much maligned in certain circles for its idealization of rationalism and all the woes of modernity, but Diderot (as our opening quote suggests) reveled in the dark and unfathomable parts of humankind.

Diderot’s Letter on the Blind for the Use of Those Who See (1749) suggested, among other things the doubtfulness of God (Diderot dabbled in deism), and put his controversial notions into the mouth of a real life person, an English mathematician named Nicholas Saunderson, who inherited the Lucasian Chair from none other than Newton, but not his quirky but nonetheless strident beliefs. Saunderson was famously irreligious, but the deathbed conversation Diderot puts in his mouth–not to mention the glorious prophecy of Darwin’s theory of evolution–was indeed fabricated.

Here’s a little sample of the offensive dialogue:

”Consider, Mr. Holmes,” he added, “what a confidence I must have in your word and in Newton’s. Though I see nothing, I admit there is in everything an admirable design and order. I hope you will not demand more. I take your word for the present state of the universe, and in return keep the liberty of thinking as I please on its ancient and primitive state, with relation to which you are as blind as myself. Here you will have no witnesses to confront me with, and your eyes are quite useless. Think, if you choose, that the design which strikes you so powerfully has always subsisted, but allow me my own contrary opinion, and allow me to believe that if we went back to the origin of things and scenes and perceived matter in motion and the evolution from chaos, we should meet with a number of shapeless creatures, instead of a few creatures highly organized. I make no criticism on the present state of things, but I can ask you some questions as to the past. For instance, I may ask you and Leibniz and Clarke and Newton, who told you that in the first instances of the formation of animals some were not headless and others footless? I might affirm that such an one had no stomach, another no intestines, that some which seemed to deserve a long duration from their possession of a stomach, palate, and teeth came to an end owing to some defect in the heart or lungs; that monsters mutually destroyed one another; that all the defective combinations of matter disappeared, and that those only survived whose mechanism was not defective in any important particular and who were able to support and perpetuate themselves.

” Suppose the first man had his larynx closed, or had lacked suitable food, or had been defective in the organs of generation, or had failed to find a mate, or had propagated in another species, what then, Mr. Holmes, would have been the fate of the human race? It would have been still merged in the general depuration of the universe, and that proud being who calls himself man, dissolved and dispersed among the molecules of matter, would have remained perhaps forever hidden among the number of mere possibilities. If shapeless creatures had never existed, you would not fail to assert that none will ever appear, and that I am throwing myself headlong into chimerical fancies, but the order is not even now so perfect as to exclude the occasional appearance of monstrosities.” Then, turning towards the clergyman, he added, “Look at me, Mr. Holmes. I have no eyes. What have we done, you and I, to God, that one of us has this organ while the other has not?”

Lettre sur les Aveugles (Letter on the Blind).So this, along with his bawdy yet still philosophical tale The Indiscrete Jewels–about a prince who gets his hands on a ring which, when turned upon the nether regions of ladies, gets them to talk, indiscreetly about their escapades–published around the same time, landed Denis Diderot in the dungeon of Vincennes, which is where we find him in the following piece. My literary offering is the first in The Spectator & the Blind Man series.

Diderot, a lover of women, music, the theatre and all that Paris had to offer did not relish his time in prison and, in order to avoid a future return, did not publish his literary works, such as Jacques the Fatalist and d’Alembert’s Dream, for which he is mostly known today. In other words, Diderot may have helped to sow the seeds of the Revolution, but, after Vincennes, he mostly avoided angering the regime by keeping his potentially controversial works in private circulation. Diderot enjoyed a good long life and died just five years before the storming of the Bastille.

The following is my piece of flash fiction imagining Diderot’s explanation to a friend for why he would do his best to never piss the authorities off again. The reading is by George Ashiotis with musical composition by Alabaster Rhumb.

 

THE PHILOSOPHE’S DREAM

Dungeon of Vincennes, 1749

No. I am no Socrates, no martyr to truth. A fishmonger of truths more like. My mistake was in allowing the odors to reach royal nostrils. Henceforth, I peddle my stinking truths underground or, if they are compliant truths, I shall dress them in suitable costumes, sufficiently powdered and pinned to ingratiate themselves to this foolish and frivolous city of mine. Ah Paris! How I adore your decadence. Let me die reaching for the cherry compote!

I digress. I must tell you about last night’s dream that frightened me nearly to death, for, though you may still despise me, I wish you to understand why I scrape the dirt floor with my chin, why I will do or say or write anything they ask of me in order to be out of here. Why I will denounce, without regret, my little Letter on the Blind.

Last night I woke out of sleep into the body and mind of Saunderson. Yes, my blind mathematician whose deathbed non-confession has stirred so much ire. I awoke into his blindness and found myself confronting not only the fumbling clergyman Holmes, but also the governor who has seen fit to thrust me into this cell.

The blindness I experienced was like that of Milton’s darkness visible, a blindness not of eyes but of mind. Understand me. I felt sharp as a whip, as brilliant of intellect as Saunderson must have been to inherit the Lucasian Chair of Mathematics (a seat held by no less a luminary than Newton) but there were no longer any images, no colors, no pictures of beauty or ugliness to be found in this Diderot-head of mine. All memory of seeing had evaporated, and it was this blankness that frightened me almost to distraction. The deprivation terrified me even as I enacted the very dialogue that has landed me in prison.

Nicholas Saunderson.As Saunderson I said, “Ah, sir, don’t talk to me of this magnificent spectacle, which it has never been my lot to enjoy. I have been condemned to spend my life in darkness, and you cite wonders quite out of my understanding, and which are only evidence for you and for those who see as you do. If you want to make me believe in God you must make me touch Him.”

“Sir,” returned the clergyman, “touch yourself, and you will recognize the Deity in the admirable mechanism of your organs.”

I countered, “All that does not appear so admirable to me as to you. But even if the animal mechanism were as perfect as you maintain, what relation is there between such mechanism and a supremely intelligent Being? If it fills you with astonishment, that is perhaps because you are accustomed to treat as miraculous everything which strikes you as beyond your own powers. I have been myself so often an object of admiration to you, that I have not a very high idea of your conception of the miraculous. You think a certain phenomenon   beyond human power and cry out that it must be the handiwork of a god.”

Next came his most persuasive argument, “Men of the highest genius, even Newton, have been impressed by the wonders of nature and recognize an intelligent being as its creator.”

As determined by my folly, I answered, “Seeing nothing, I will acquiesce to you and Newton an admirable design and order. I hope you will not demand more. I take your word for the present state of the universe, and in return keep the liberty of thinking as I please on its primitive state, with relation to which you are as blind as myself.”

Finally, as I have written to my sorrow so I spoke in my dream, “If we went back to the origin of things and perceived the evolution from chaos, we should meet with any number of shapeless creatures. In the first instances of the formation of animals some were perhaps headless and others footless, some stomachless and others lacked intestines. Only those not defective in any important particular survived and perpetuated themselves.”

I stopped his protestations before they started, “Perhaps you will assert that deformed creatures never existed and that I am throwing myself headlong into chimerical fancies, but the order is not even now so perfect as to exclude the occasional appearance of monstrosities.”

I turned, my Saunderson, towards the clergyman and performed what is, in my Letter on the Blind, the coup de grâce. “Look at me, Mr. Holmes. I have no eyes. What have we done, you and I, to God, that one of us has this organ while the other has not?”

Suddenly my fanciful dialogue shifted to nightmare and, instead of the tears gushing from the eyes of the sympathetic clergyman, the menacing voice of the governor materialized from the void. “these are lovely sentiments my dear blind philosophe. They will nicely condemn you in the court of God and man. We will take your deformity into consideration by removing the mask that we offer unblind (if such things exist) heathens. It will do the people good to see your vacant eyes roll with your head. Such a treat to see a monster (as even you have named yourself) demolished.”

With the demonic intoning came the arms out of hell to lift me onto the block where my neck was stretched. The whoosh of the upswept blade penetrated my too-sensitive ears and the steel crashed down. Only then did I wake once more into this seeing body, screams strangling my throat with mingled horror and relief.

*This is essay 20 of #52essays2017. Read #19 Sometimes a Snake is Just a Snake*

1984: Late to the Party Again, Essay 6 of #52essays2017

Menacing cover of a Czech copy of 1984In the year 1984, I was in sixth grade, a scholarship child in a private girl school. The eighth graders were reading George Orwell’s 1984 and had plastered the walls with images of our headmistress that read, “Big Sister is Watching YOU.” We didn’t know what it meant, but we understood that it was witty and smart and that that group of girls was particularly beloved by the teachers, headmistress and principle and could get away with such things. Our class, dominated by girls whose anger and sadness ruled their intelligence, was not, I understand now, so beloved.

Though I’d started having trouble seeing the blackboard back in fourth grade, it was not until sixth that I began having trouble reading print. One time in history class, which I loved, I was taking a pop quiz and stared at the purple ditto ink, astonished and afraid because I couldn’t make out a single word. I raised my hand and told Mrs. Clark in a nervous whisper that I wasn’t able to read it. She turned the paper over and there was the quiz! We laughed. I told that story many times in those years when my eye disease seemed merely an odd anomaly, a predicament that presented problems easily solved in a class of 40 with smart caring teachers.

It was also in sixth grade that I was presenting a book report with my friend (with whom I would in another year or two vandalize the school one night with shaving cream), reading notes we’d written with pale blue ink that I suddenly could not read, and I stumbled over my part of the presentation. She laughed and snatched the notes away. It was not mean-spirited. She simply took control of what I’d not been able to do. I stood, as I would so often stand through my teens and twenties, very still, mortified. It was my great shame not to be able to read anymore.

In earlier grades, I’d been a great reader, a cocky little reader who’d gleefully raise her hand to read aloud and took pride in reading ahead while my classmates labored. I’d show off the adult books I was reading, pilfered from my mother’s bookcase, Agatha Christie mysteries, Gone with the Wind.

Some of my favorite memories of childhood are of reading in special places. I remember finishing Little Women while sitting in the branches of a tree in the huge shared backyard of my grandmother’s apartment complex. I remember reading the end of Jane Eyre, tears rolling down my face in the window seat of the library on 9th Avenue, where I’d wait for my mother to get off work at the clothing boutique around the corner on Clement Street. And I remember reading Poe stories on the bus ride out to the SF Zoo to volunteer on Saturday mornings.

By the time I was in eighth Grade, and it was our turn to read 1984, reading was no longer a pleasure but a chore. I never finished it. I bluffed my way through. If I had good lighting, was not tired, and did not mind how slow it went, I could still read for another year or two, but mostly, the act of scanning words with eyeballs had a hole in it. Where the words should be, there was nothing.

I did not get into the fancy high schools of my peers. I went instead to my neighborhood public school, where my mother had gone before me. I received no help and my rebel self wanted none. I had my smarts and the classes were not challenging. They sucked and I hated it all except for ninth grade English Honors.

Mr. Davis squeezed a few more reads out of me–I remember being particularly engrossed by Green Mansions. He had us watch Cocteau’s La Belle et la Bete, which made a lasting visual impression on me though I could not read the subtitles. He also kept alive for a little while longer the pleasure I took in writing–I’d thankfully taught myself to touch-type the year before on my mom’s manual typewriter. For his class I typed up the last story I would write for a long time. It was about two girls who’d run away. They sat smoking in the McDonald’s on Powell Street. Only one had a pang of regret for the childhood lost and the certainty she’d never go back. I believe that was my last A until college.

Some paltry years of learning flew by, with little school attendance and much teenage debauchery. I cut classes and smoked cigarettes in a café down the street with my best friend–the best friend I still have and the only good take away from that school other than Honors English. I still fancied myself intelligent, a writer. I think I even sometimes dreamed of getting a doctorate someday.

But words and faces were slipping from me: wandering the used bookshop with my friends meant faking it. Looking in used record shops meant looking for recognizable covers with large print. Watching TV meant pretending to see what was going on if it were more than a few feet from me. I took it all in as shame and anger and nursed it with booze and candy.

Doctored newspaper clipping of Tony Randall handing RFB&D Achievement Award to GodinWhen I finally dropped out of high school, it was in order to move on to City College. High School was not working. Finally I got help. Finally I learned about an organization called Recording for the Blind and Dyslexic from whom I would receive an achievement award upon my college graduation some years down the line, handed to me in a fancy ceremony in NYC by Tony Randall. Now RFB&D is called Learning Ally and students don’t have to wait for their digital downloads–blind kids are so lucky these days!–but back in the pre-digital stone age, they sent clunky blue boxes of recorded books on tape cassettes via snail mail.

The first book I remember listening to on the plastic companion cassette player was 1984, the aborted read from years earlier. I was completely hooked and listened to it over the course of a night. The best part about reading by listening is that you do not have to worry about your eyes getting tired.

But those little blue boxes were limited. It takes a long time to have people read books onto tape and to process them. It took time for them to arrive in the mail, a delay of one to three weeks. So that sometimes, by the time I received them, I’d forgotten what prompted me to order them. I could not borrow books from friends and I could not often even get ahold of those they were reading, but at least I could read some. Eating chips or smoking while listening to novels was my great escape.

It was wonderful to have access to books again, but there was shame in those blue boxes, shame in listening to books with my ears instead of reading with my eyes. I hid them away from my friends as much as possible.

Although I still listen to books, having them come to me in a digital file that I listen to in a ubiquitous and perfectly quotidian iPhone has changed everything. The shame is gone, or nearly so. There are so many books available to me through blind organizations such as Bookshare, or through universally available sources such as Project Gutenberg and Kindle, that I can get ahold of most everything I want to read quickly and easily. Others I can scan. In fact, I have so many books on my phone that it has, I’m afraid, made me a little more deficient in attention than I once was, but I’ll take the downside with the many upsides of being able to be current with my intellectual interests. And also able to keep up with what’s going on in the world’s intellectual meanderings, such as they are.

This time, when the call to read 1984 shot around the internet, I was able to download and start reading it immediately. Naturally I’m horrified and darkly amused by the ludicrous behavior of this president and his lackeys with their “alternative facts,” but in some ways I’m more concerned about the hypocrisy of so many of my peers who seem already to have forgotten the jokes and apathy that led up to the election. It is trendy to bash this sad sack in the White House but unthinkable to question one’s own culpability.

Honestly, I’ve shied away from the news since the new presidency. An avid listener to NPR since the Gulf War in 1990, last fall found me angry at my radio for the first time for taking Trump seriously on the one hand, and as just an impossible joke on the other. That so many people I knew felt mostly apathy before the election and have turned fanatical since also feels like a betrayal on the order of 1984 itself. “‘The only evidence is inside my own mind, and I don’t know with any certainty that any other human being shares my memories.'”

The connections between 1984 and the current state of affairs in politics that put the 68-year-old novel at the top of Amazon’s Bestseller list is obvious, but it ought to be recognized as complicated, as our hero Winston Smith is complicated. If Trump being in the white house suggests the regime of Big Brother, I think we ought to allow for the possibility that we are like the very flawed Winston who can in one breath cling to his humanity as the only weapon against the Party:

“‘If you can feel that staying human is worthwhile, even when it can’t have any result whatever, you’ve beaten them.'”

And in the next throw away that humanity in the thoughtless acceptance of rebelling:

“‘You are prepared to cheat, to forge, to blackmail, to corrupt the minds of children, to distribute habit-forming drugs, to encourage prostitution, to disseminate venereal diseases–to do anything which is likely to cause demoralisation and weaken the power of the Party?’

‘Yes.’

‘If, for example, it would somehow serve our interests to throw sulphuric acid in a child’s face–are you prepared to do that?’

‘Yes.'”

These words will come back to haunt Winston in the Ministry of Love even before the final betrayal, suggesting an irony that in the very act of rebelling he steps that much closer to those he is rebelling against, towards their destructive utilitarian philosophy that deems the most heinous acts worthy if they further the cause. To lose one’s humanity in the face of fear and anger is too easy and more dangerous if left unrecognized.

 

*This is essay 6 of #52essays2017, written with all four senses and remembered sight. Read my previous essay Ylang-ylang: Calming the Panic of Love & Memory here*

A Blind Person’s Notes on Notes On Blindness and Touching the Rock

Notes on Blindness movie poster featuring John Hull with visual memories superimposed on his head
Upon entering the Film forum, where Notes on Blindness, an innovative documentary centered around the voice of John Hull recorded in the early years of his complete vision loss, is playing, I was offered a headset, but told that I should only wear it over one ear. It turned out that I could not mix the audio description track with the soundtrack. The only solution was to put the audio description on low in one ear and hook the other plush earphone–like the kind one uses for recording–around my head to rest behind the other ear. The contraption was a little tight and began to squish my brains after not too long, and I should say that I don’t have a very big head, at least not literally.

Though the system was not ideal, the audio description turned out to be quite pleasant. And yet I found sitting in my own little audio bubble to be a bit strange. Usually my head would’ve been resting on my boyfriend’s shoulder to facilitate his whispered descriptions. The sensation of separation was both cool and lonely, our only connection the shared bag of popcorn. As Notes on Blindness suggests, blindness is a paradoxical gift–not one Hull (or I) would have asked for, but still with unique compensations, one being the closeness that comes with occasional dependence, a closeness that can sometimes be awkward and other times charming.

 

I was excited to experience Notes on Blindness because I remembered reading Touching the Rock (John Hull’s recordings in book form) when I was new to New York and grad school. At that time, some of his observations resonated, such as the social difficulties of negotiating parties and bars, as well as the interesting, and not always unfortunate, adaptations one makes when one is forced to read books with one’s ears instead of eyes, such as the development of a good auditory memory and acute attention to the spoken word. But at that time in my progressive cone-rod dystrophy, I steadfastly existed as a visually impaired–not a blind person–and could not relate to the vast majority of Hull’s observations.

Twenty years later, I find that Hull’s words resonate more fully, but that his experience still differs from my own in some fundamental ways. For example, now I understand his sometimes strong desire “to hide my face from others” and wonder with him, “Is this a primitive desire to find some kind of equality? Since your face is not available to me, why should my face be available to you?” But I do not feel Hull’s “horror of being faceless, of forgetting one’s own appearance, of having no face.” I’m very aware, self-conscious even, of my face being present and vulnerable to the gaze of others. In this way, I believe my experience of blindness is colored by my experience as a woman, with all its attendant expectations of beauty.

Of course, Hull is but one individual who lived one path that included blindness. He was also a father, a husband, an educator, a deeply religious man born in a particular time and place, whose unique and philosophical observations ought to chip away at, rather than fortify, the monolith called blindness.

Hull alludes to the impossibility of speaking for all blind people in his preface “To the Blind Reader”: “Blind people differ from each other as much as sighted people do. I do not claim to speak for you, but only for myself. You do not need to know what blindness is like, because you are blind.” As a matter of fact, I am intensely curious to learn about his experience of blindness because it is, in many ways, very different from my own. I do not accept his assertion that I “know what blindness is” for anyone but myself.

In “The ‘Dark, Paradoxical Gift’” (first published in 1991 in The New York Review of Books and republished as a forward to subsequent editions of Touching the rock), Oliver Sacks writes, “There has never been, to my knowledge, so minute and fascinating (and frightening) an account of how not only the outer eye, but the “inner eye,” gradually vanishes with blindness; of the steady loss of visual memory, visual imagery, visual orientation, visual concepts,… into the state which he calls ‘deep blindness.'”

Sacks did not at first question hull’s assertion of “deep blindness”–where physical sight loss leads inevitably to a shutting of the inner eye. But almost twenty years later, in The Mind’s Eye he admits his mistake:

“I assumed that Hull’s experience was typical of acquired blindness, the response, sooner or later, of everyone who loses sight–and a brilliant example of cortical plasticity.

“Yet when I came to publish an essay on Hull’s book in 1991, I was taken aback to receive a number of letters from blind people, letters that were often somewhat puzzled and occasionally indignant in tone. Many of these people wrote that they could not identify with Hull’s experience and said that they themselves, even decades after losing their sight, had never lost their visual images or memories. One woman, who had lost her sight at fifteen, wrote:

“‘Even though I am totally blind … I consider myself a very visual person. I still “see” objects in front of me. As I am typing now I can see my hands on the keyboard…. I don’t feel comfortable in a new environment until I have a mental picture of its appearance….'”

Those words could have been written by me, so close are they to expressing my reliance upon and constant sense of the visible. Unlike Hull who loses his visual memories and the ability to create new ones, I, like the woman above, use the inner eye to map and remember my world as I encounter it. For example, although I cannot in any sense have been said to experience a recent dinner party–From the outfit I was wearing to the position of others at the table to the food on the plate in front of me–through my physical eyes, when I call it to mind, it appears as a vivid tableau, punctuated by conversation and smells, but occupying mental space just as those memories from before vision loss.

In the Mind’s Eye Sacks presents Hull’s concept of deep blindness in dialogue with alternate neurological responses to total vision loss .Sacks writes, “Had I been wrong, or at least one-sided, in accepting Hull’s experience as a typical response to blindness? Had I been guilty of emphasizing one mode of response too strongly, oblivious to other, radically different possibilities?”

Sacks goes on to relate the story of Zoltan Torey and others blinded, but retaining a strong sense of the lasting vitality of the inner eye. The experience of blindness reveals itself to be as complex as the experience of sight. Even though Hull’s experience of deep blindness is not my own, his philosophical and sociological grappling is fascinating and intellectually stimulating, as well as entertaining.

In Notes on Blindness, I found Hull’s considerable insights smothered by the family recreations and straining narrative–a narrative that is precisely flouted in Touching the Rock. Notes on Blindness seems not to be fueled by Hull’s wanting “to understand blindness” but rather by the more quotidian formula of overcoming blindness, his original conception of deep blindness barely alluded to. The movie attempts to shape the meandering thoughts of a very smart and philosophically-minded blind man into a domesticated docudrama, where Hull’s recorded meanderings project a bleak arc.

But, like most blind people I know, Hull has a lively sense of humor regarding himself and the sighted people he must deal with, which sparkle throughout Touching the rock that would have added much fun and insight to the film. For instance in a 1984 entry entitled “Does he take sugar?” Hull describes behaviors painfully familiar to me:

“This situation often seems to arise when I am getting in a car with a group of other people. ‘Will you put John in the back with you?’ ‘No, I’ll put him in the front with you.’ ‘All right, you put him in then.’ At this point, I interjected, crying out with an exceedingly loud voice, ‘John is not put anywhere, thank you very much. John is asked if he has any preferences about where he sits.’ At this, all my friends laughed uproariously and were covered with apologies and confusions. On a similar occasion recently, I shouted out, ‘Hey, you guys, don’t you talk about me as if I’m not here.’ This, again, brought shouts of laughter and a mixture of apologies, agreements and congratulations.

“It is, of course, very embarrassing for intelligent and sensitive people when they are caught out like this, in using the ‘Does he take sugar?’ approach to a disabled person. These people are all sensitive, and well aware of the humiliation which this approach implies. So the question arises, why do they do it?

“It is so easy to marginalize a blind person; indeed, in certain situations it is almost impossible not to.”

There is great pathos in the film, but I found the highly stylized and self-conscious metaphorics a bit much, though that could in part be a problem of translation–how many times can a person hear “fade to black” without feeling bored? The raining indoors (and without the family taking notice of it) also seemed needlessly artsy and contrived–not nearly as beautiful as Hull’s intricate description of the sound picture made by rain earlier in the film.

On the other hand, the filmmakers neglect what, to my mind, is one of the most outrageously visual scenes in Touching the rock. Perhaps they felt that a blind man stretched upon an enormous stone altar at the front of an abbey that he had learned by feel, incrementally, and alone in the dead of night, would be too weird or offensive. But it is precisely this image that expresses the whole body seeing that seems ultimately to offer Hull compensation:

“Every night I returned, to explore a little bit more. From pillar to pillar I would work my way, counting the steps, remembering the angles, always returning to the foot of the stairway.

“After several nights, I discovered the main altar. I had been told about this, and I easily recognized it from the description. It was a single block of marble. Finding one corner, I ran my fingers along the edge, only to find that I could not reach the other end. I worked my way along the front and was amazed at its size. The front was carved with hard, cold letters. They stood out boldly, but I could not be bothered reading them. The top was as smooth as silk, but how far back did it go? I stretched my arms out over it but could not reach the back. This was incredible. It must have a back somewhere. Pushing myself up on to it, my feet hanging out over the front, I could reach the back. I did this again and again, measuring it with my body, till at last I began to have some idea of its proportions. It was bigger than me and much older. There were several places on the polished surface which were marked with long, rather irregular indentations, not cracks, but imperfections of some kind. Could it have been dropped? These marks felt like the result of impact. The contrast between the rough depressions and the huge polished areas was extraordinary. Here was the work of people, grinding this thing, smoothing it to an almost greasy, slightly dusty finish which went slippery when I licked it. Here were these abrasions, something more primitive, the naked heart of the rock.”

I fear I may be criticized for having anything negative to say about a film that I should appreciate, perhaps, simply because it attempts to illuminate, in these dark times, a unique perspective, and even includes me, a blind movie-goer into the experience by offering audio description. I think it would be a fair criticism; I would not even feel comfortable writing about–even offering, in my meandering way, a review–on something that was not ostensibly accessible to my appreciation of it. So the opportunity is not to be squandered.

I used to love movies and have in my mind’s eye scenes, decadent visual images (several from The Cook, The Thief, His Wife, And Her Lover, for example!), to remind me that filmmaking tends to be extremely visual, though many blind people I know get quite a bit from listening to movies. In other words, I am delighted to write about Notes on Blindness and thrilled to have had an afternoon at the movies to enjoy something that was made, at least in part, with someone like me in mind. I hope there will be more.

To Stravinsky, a poem in memory of my guide dog Igor

November 13 is the birthday of Igor, my last guide dog. It is a day to celebrate his short life as well as the diligent and loving lives of guide dogs everywhere. Please consider a donation to the fund I set up at the Animal Medical Center in honor of him and my first guide dog, Millennium.

This week Stravinsky, Igor's plant spirit, found himself front and center in the Godin's World Fair, amongst colored lights and origami braille cranes.

To Stravinsky

I write to you, Stravinsky,

Because he, for whom you are named,

Is nowhere to be found.

You sit on my desk next to keepsakes

From his short life

And are easy to take care of,

Therefore easy to love.

 

Let me tell you how you came to occupy

This tiny exalted place…

 

Three days after I lost him

I cleaned mindlessly,

Brought out the vacuum and went to work.

Being blind helps forgetfulness:

Out of sight out of

 

BAM CLATTER

 

I hit the aluminum dog bowls

And probably shrieked.

I picked up the two bowls

As if they might bite or squirm

And dropped them into recycling.

Then I went and cried in human arms.

 

In those arms,

Deep within my sobs,

I conceived a ritual from nowhere,

A rite of spring.

 

I want to go buy a plant tonight,

I will name it Stravinsky,

Spirit of Igor.

 

I picked out and washed the water bowl,

Set it on my desk,

Another empty vessel.

 

At the florist I asked for a plant

That was easy to take care of.

The woman named one

And I asked if it was viney.

She said No,

That one stood straight up like a tree,

A popular plant,

Recommended by some celebrity doctor

For its air purification properties.

 

I was not interested in pure air.

I wanted prehistoric leafy tendrils

Of encroaching flourishing

With minimal fuss.

 

Like all dark relationships,

Ours, Stravinsky, is complicated.

 

I might have hated plant life

Since green grass tempted him

And led him to swallow the neon vine

 

That stuck in his stomach

That led to the surgery

That sliced the tiny incision

That led to the microscopic sepsis

That led to the systemic failure

That led to the pneumonia

That gave final cause for his

Being nowhere to be found.

 

But I do not believe in fate

Or in the culpability of nature

Any more than I believe you to be

A fit substitute receptacle

For my I love yous.

 

Even so,

I love you Stravinsky.

In his bowl I keep you

Healthy and happy.

It is easy to water

You every ten days,

Gratifying to have your reachy growth

On this simple expanse of desk.

Still, if you do not outlive me,

I doubt I will cry at all.

*This poem was first published at Quail Bell Magazine*