Not Quite Face-Blind, Not Quite Blind

Last night we opened CONES to a big and friendly crowd. I can't really see anyone during the show (and if you've seen CONES or kept up with this blog, then you know why), so I invited everyone to come say hi afterward. Even when people I know come up to me one by one, it can take me a moment to figure out who folks are, especially people I don't see often. The irony is that I've written this blog and made this show about being in between sighted and blind, and immediately afterward everyone gets to test it out—each of them once, me over and over again.

A few months back I wrote about prosopagnosia, or face-blindness, a neurological condition that I do not have. Here's another podcast about face blindness from the excellent Aussie/Kiwi programme Paper Radio. In this one a guy name John shares firsthand accounts of the split between intelligence and emotion that comes with face-blindness. Again, even though our conditions differ, I relate strongly to John's experiences, especially in his having an undiagnosed condition and then discovering what it is, and also about the process of passing and having a coming-out ceremony.

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CONES runs for two more nights in Philly. Details here.

A Battlefield of Bad Eyes

"If blind students can earn college degrees, surely we can make arrangements so that myopic children can see the blackboard without resorting to glasses. They can be allowed to sit in the front rows, the teacher can write larger, the blackboard can be better lighted." — Donald S. Rehm, The Myopia Myth, 1981, 2001.

In building out a science report scene for CONES, I researched some stats on eyeglasses. Though the numbers don't always add up and vary from source to source, the consensus is that most adults now wear glasses, and that the number of North Americans with myopia (nearsightedness) has just about doubled in the past 50 years. Most sources agree that the uptick in myopia is due to people spending more time indoors looking at screens, and that more "traditional" activities (i.e., hunting and farming) would be a way for people to prevent myopia.


What people disagree on is what to do to treat myopia. Modern optometry leans toward "correction" through prescription, and a lot the websites advocating for this are run by prescription lens companies and optometrists who do not mention vision therapy and lifestyle changes that could help strengthen the eyes. Meanwhile, more people are asking, "Do glasses make my eyes worse?" The optometry professionals at the top of a search results who say, "No," primarily defend glasses as a solution by citing age-related presbyopia, or farsightedness resulting from the harding of our lenses (the natural ones in our eyes just behind the cornea). But what about the myopia that more and more of us are experiencing earlier in life?

Donald S. Rehm, an engineer and founder of the Myopia Prevention Association, has an interesting treatise on how corrective lenses can make myopia worse. Rehm presents some good optical science and relates it to eye physiology to demonstrate how lenses typically prescribed for nearsighted people can do a lot of damage in attempting to correct a person's vision. While Rehm's view (and earlier, Dr. William H. Bates, who advocated for getting rid of glasses) is unpopular in mainstream optometry, it opens up many questions that many conventional eye doctors have long been silencing: Why has myopia been on the rise? And why do most people with myopia need to get stronger lenses every year?

My experience as a person with myopia is that optometry has been a battleground between these two camps. People like Rehm and Bates (who don't fully agree with each other), or vision therapists like Meir Schneider, are cast to the fringes for their outspokenness (and it doesn't help that most of these guys' websites look like they were designed by 8th graders in the mid-1990s). Many other functional optometrists share these dissenting views, but have learned to keep quiet about it in order to continue working. This is very upsetting to those of us with severe myopia, left as casualties on this battlefield, not knowing whom to turn to for support. This blog and the piece I'm making are a step toward finding that support.

"31 Eyes"

I have a confession to make: This is not the first blog I've made about vision. It is the second.

In 2010 I wrote a month-long blog called 31 Eyes (one for each of day of the month) that featured daily tips toward improving one's vision. See it here.

I based a lot of 31 Eyes' material on the work of natural vision therapists like William H. Bates and Meir Schneider. Today in rehearsal we looked at one of Schneider's "Yoga for the Eyes" videos. This one:


It's amazing to revisit this work and to remember how helpful it was in bringing relaxation to my eyes as well as improvements to my vision. 5 years after making 31 Eyes and 18 years after adopting Schneider's methods, I say watch this video, have a look at the blog, and try these exercises. We might also be doing some together during the show.

CONES on the Radio

Jonathan Pfeffer recorded me for the NPR show The Pulse. Listen here.

Unproofread = Unprofessional?

I've started sending things I write to proofreaders. This cone dystrophy of mine is a recipe for tons of typos. But I may need proofreading for more than just the things I write.

A snippet of CONES premiered at FringeArts' last night alongside other works in progress. They'd sent me this tech schedule:

 ...which was a little small, so I enlarged it on my screen:

I noted "3:30" on my calendar and asked my ride to come at rehearsal at 2:00. She watched a run and at 2:30 we packed up to hit the road before 3:00, but with bad traffic we loaded in at 3:35. The tech folks asked for my lighting and sound cues, and then told me that my tech time had been from 3:00 to 3:30.

How did I mess this up? I'd registered what I'd seen in the email and confirmed the time with collaborators. I felt unprofessional and undependable, but I swear I'd read 3:30. So I re-examined the original email and scanned around a little more to discover this:

Zooming in earlier, I'd only seen the end time for my tech slot and thought it was the start time.

Stuff like this always happens and I often feel like a goat at a banquet. Do I need a secretary to handle all my scheduling and other affairs? Or do I need to tell everyone, "Hey, I can't see so well. If I screw up, it might be due to that, not me just being a flake."

Last night's saving grace was that the power went out and the whole show happened with the audience shining 100 flashlights onto the stage. Everything looked great and the piece about vampires and vision loss especially benefitted from the circumstances.

Why I'm Paying for Typos

Of all the cool things that eye doctors use to test people's vision, none is a better indicator of what's going on in the retina than this simple grid devised by Professor Marc Amsler in 1945.

Cover one eye and focus the other on the dot in the center of the grid:

What do you see? And what don't you see? What's great about the Amsler Grid is that we know that it's a grid—a big square made up of smaller, evenly-sized squares separated by horizontal and vertical lines. But is that what you see? Try it with the other eye.

When I look at an Amsler Grid, here are the sorts of things that happen for me:

To my eyes, entire line segments are missing and others are distorted into moving, twisting shaped, indicating blind spots in the retina. Some of this is normal—the optic nerve occupies a chunk of space in the human retina causing a blind spot in everybody's eyes. The Amsler Grid lets us know where that spot is, and any distortion is what the brain does to fill in the gap.

My grid is bit more extreme because of the dystrophy in my retinal cells, and while the Amsler Grid demonstrates that clearly, it's also happening to everything I look at, including more irregular shapes like printed words. 

If you've read this blog, you've probably seen my typos and articles about them, and this week I had two more that were costly: The poster for CONES came back with "donation" spelled "doantion". No big deal—I'd only printed a dozen. But when 500 palm cards showed up with the wrong date on them, I had to fork out for a reprint:

JUNE 24 = WRONG DATE

JUNE 23 = CORRECT DATE

I had three different people proofread the graphic before I sent it off. No spelling mistakes, just an incorrect date that wasn't spotted. Anyway, they're back from the printer and they look great. Hope you can make it to the show. Just don't show up on the 24th.

Double Dissed...Again

Today, I fell off the stage. Twice. I can't really walk right now.

This happened because I was working blindfolded and tried setting things in ne places. Doing that threw off my spatial awareness.

Good news: My leg doesn't feel broken, just sprained. And I'm enjoying the irony of giving myself a disability while making a show about having a disability. 

Ears ≈ Eyes

I have a friend who's losing his hearing. He just visited me for a couple of days. Yesterday we were having lunch and talking when he kept turning his head and bending his opposite ear in order to hear me, so I said, "Do you want to switch places so that I'm facing your better ear?" We switched and then talked about it, and I told him stories about the visual equivalent where I sit at a lunch table facing someone and if the light is behind them I'll figure out some way for us to switch places. If they know me, I'll ask them, but if it's someone I do't know so well, I may have to do what amounts to turning my head and bending an ear.

So many of his stories about passing as a hearing person reflected my own in passing as sighted. We both have difficulty understanding everything that transpires in meetings. We are both sometimes interpreted as being aloof, distant, or just straight up assholes who don't acknowledge others, but really we just didn't see or hear something or someone. Sure, he could be brandishing an ear trumpet, and me sunglasses and cane, but there's a whole other set of baggage that comes attached to that, a passing as fully disabled and then being disregarded for a whole other set of reasons.

There ought to be a blog, and a theatre piece, about such stuff.

One Month Away

CONES: a solo show about vampires, vision loss, and ice cream (and the impetus for this blog) opens one month from today. Here's a peek at the front of the show flyer:

And the back:

You can join the event on Facebook here, see it on the Rotunda's website here, and on the Mediums' website here.

Hope to see you there!

Seeing Spots

Dr. Shinobu Ishihara created some of the most beautiful designs of the 20th century. Large spots composed of seemingly random patterns of smaller dots in various diameters and colors. I looked at them occasionally as a kid, wishing that I could have them to keep, as wall paper or curtains or clothing. But the only time that I was permitted to look at Dr. Ishihara's artwork was when I visited the eye doctor.

To me Ishihara's colorblindness tests have the chaotically gorgeous aesthetics of chameleon skin: a jumble of tiny scales whose pigmentation tends to change over time. But someone with better working cones receptors might see numbers or shapes embedded in these designs.

Do you see numerals embedded in these dots? I don't, at least not on the examples I've given here. I do a suggestion of numerals in some of these patterns, but in none of these could I tell you (or an eye doctor) what they are.

For folks with fully functioning cones, this example can clue you in as to what I do see. On the far right is how a person with X-linded reg-green colorblindness might see an Ishihara image with mixed pigment dots—that's not what I see. I'm the example in the middle—"partially colorblind"—and, truth be told, the leftmost image and the center image look identical to me.

When was your last Ishihara test? You can take one version of the test here. 38 plates, starting with number identification and then moving onto counting squiggly lines. It tracks all your answers and then grades each one as "correct", "partially correct" or "wrong", comprising an overall rating of red-green color blindness. I felt like my color blindness was strong, but it rated me as "moderate". If you take the test, I'd love to know your results and experiences. Leave them in the comments below.

Fonts for Flyers

What font comes to mind when making a show about eyes? Snellen, of course. Everyone will recognize the "E":

But this particular Snellen font is a bit off. The "E" is right, as are the "C" and the "O", but Snellen eye charts only use certain letters, so that really pathetic "N" is just Snellen's "Z" turned on its side. And the "S" they borrowed from a sans serif eye chart font called Sloan:

Better, but neither the Sloan font nor the title really says "this is a show about vision loss". I could hand-draw the missing Snellen letters, but unless I'm laying things out like an eye chart, it's not worth it.

I also came a across a font called "Colorblind". True to its name, it has no color:

But if I add color to it, it recalls Dr. Ishihara's well-known colorblindness test and then the name makes more sense. Here it is with our image:

Posters and postcards coming soon...

Bowling Blind

Last year I inherited my grandfather's shoes. But it was my grandmother who gave me her eyes and the cone dystrophy that's at the center of this blog.

Grandpa Dan had been a league bowler in Illinois. He'd once bowled a perfect game. But I have never and will never bowl a perfect game, because I grew up in Boston. And that means I grew up with candlepin bowling. 

I could wax nostalgic on this great New England pastime, but this is a blog about vision loss. I'll let this vintage article about candlepin bowling explain the game to all you barnies out there. And here's a photo of the candlepin lanes I once called home in Davis Square:

I started bowling when I was six, and even then I had trouble seeing the tall, skinny candlepins. Had I ventured up the lane, I would have understood their triangular layout, but from far away they looked like a set of clenched teeth waiting to be knocked out. And knock them out I did, like some maniac dentist who hurls 2-pound marbles into his patients' open mouths until someone tells him that the game is over. When it came time to tally the score, I usually thought my 6 was a 7, not because I was a cheater or a spoilsport, but because the ninepin was hidden behind the three and I just couldn't see.

On a trip to Boston last week, I went candlepinning with my mom. I know she reads this blog, and probably wasn't thinking of how much my vision has waned when she told me that I could do better every time I missed my pins altogether. I thought of my Grandpa Dan, the tenpin (a.k.a. "big ball") league bowler whose shoes I'd inherited, and how he'd also lost his vision, only it was suddenly when age-related macular degeneration set in. And I thought of how even into his 90s, even with a white cane and dark glasses, Grandpa Dan continued to bowl. 

So I, now, standing in my grandfather's shoes, wearing my grandmother's cone dystrophic eyes, breathe with ball in hand, tapping into all my senses. Legs run forward, arm swings back, and I bowl. I bowl a strike, and then blow it in the next frame with a gutter ball. I score a 7, but the now automated scoring system tells me it's actually a 6. No one to argue with, just balls to bowl, pins to fell, shoes to wear, and eyes that see differently with the passing of each frame.

I.D. Expired

The MBTA's 5-year pass for the visually impaired sure comes in handy whenever I visit Boston. And I now know the sound the machine makes once that pass has expired. I also know that, despite the signs posted at Back Bay Station, that the office to get a new card has moved to Downtown Crossing. A lovely walk across Copley Square, the Public Garden and Boston Common took me there. They gave me a number, and then a new card.

See you in 5 years.

The Problem With Beige

I usually practice yoga on a mat made from jute, plant fiber that's used to make burlap. I just acquired some pants, also made of natural fiber, that I practice in, both the mat and pants are similar in tone to my skin:

Sometimes when I'm practicing and the light is a certain way, I cannot see my own hands or feet. And now with these pants my legs have disappeared as well. 

Fanning Flames

I made my first protest sign when I was very little. There was this impending tax cut called Proposition 2½ that would impact public schools, and my mom and her friends were against it. My sign, drawn in red and orange crayon, had a picture of a flame and the words, "Proposition 2½ is like a flame: it fires people."

The next morning, parents and children and teachers gathered for the protest. We marched around an intersection. We blocked traffic. One driver got so pissed that he rammed through the crowd and carried a guy away on his hood.

I've always gone to protests. It's part of the American tradition. It's what we do—what we've always done when our government isn't working for us. We've refused to pay taxes. We've thrown bales of tea into the harbor. We've freed slaves. We've marched and stood and sat where we've been told we couldn't march or stand or sit. We've decreed the right of the people to alter or to abolish any destructive form of government, and we've done that. And we continue to do that.

150 years after the abolition of slavery and 50 years after the Civil Rights Movement, people of color are still getting a raw deal in the United States. Police and courts and jails carry on persecuting, prosecuting and executing African-Americans at much higher rates than other citizens. Folks are fed up with this, and they are protesting. So yesterday I marched. And people blocked traffic. And police came and I saw cruisers and horses and nightsticks. And I heard sirens and helicopters and shouting. 

Having low vision makes being at protests a little confusing. I can't really tell you everything that happened yesterday, because I couldn't see much. Sometimes this makes things scary, and sometimes my ignorance might save me.

Several years ago I was at a manifestação in Brazil where activists were publicly occupying a building. The police came and the crowd I was with suddenly shouted and ran away. I had no idea why. I'd only been there for a week, was just learning their language, their history, their laws, their culture. So I didn't know that Brazil's polícia militar can just pull out their guns and shoot them. And if they did this, I didn't see it. I just stood there. And if the tiras did draw their guns and I just stood there, they must have thought that I wasn't running because I wasn't a troublemaker, so they ignored me.

As I see less, I go out and protest less, but I think it should be the other way around. Even though no one is "doing" blindness to me, things are getting harder. And when things get harder, we need to raise our voices more. Yet as time marches on, I access fewer services for the visually impaired, not more. What's happened? Have I become the visual equivalent of a complacent liberal whose flames of discontent have been reduced to little embers burning dimly in the back of my eyes? Or has this blog become my protest sign that I waggle around from the safety of an armchair?

Happy May Day. See you in the street.

Seeing Song #1: That's Nash, Not Cash

In 2004 I went on a retreat co-led by Marc Grossman, a functional optometrist who also practices Chinese medicine. Everyone at the retreat had some sort of visual condition (mostly presbyopia) that they wanted to alleviate, and my own cone dystrophy was perhaps the most severe condition in the room, even though I was the youngest person there. I was also the only male, aside from the facilitators.

Over the course of the week we did eye exercises, some meditating and journaling, and practiced a daily yoga sequence designed to stimulate meridians associated with vision. At week's end everyone was eager to receive Dr. Grossman's herbal and dietary prescriptions tailored to our specific eye troubles. But the moment that brought the greatest elation was when he put on a CD and this song played:


I love Johnny Nash's original version because it gradually introduces dissonant elements that build tension in an otherwise "everything-is-just-hunky-dory" type song: An out-of-tune accordion kicks in on the second verse, a Moog synthesizer takes over the bridge, and lyrics about blue skies shift into foreboding minor keys because we know that life's not really gonna be all bright and sunshiny every day, right? But we can hope, just like a roomful of middle-aged ladies who smile and dance along at a yoga studio in the Berkshires, ready to drive back to Long Island, to their homes and their husbands, maybe to try on their miracle cures.

PS: I absolutely recommend taking a workshop with Marc, and I have lots to say about functional optometry, acupuncture, herbal medicine and yoga as methods for improving vision. If you're curious, leave me a comment below.

Dumb Waiter

This might be a little gruesome. Read at your own risk.

I grew up in a tough neighborhood. I was a bookish, bespectacled kid in a school full of jocks. Walking home without torment from bullies was rare. And gym class was like an hour-long hazing ritual for a club that I'd never be admitted to.

There was one bully in particular who did more than just call me a "four-eyed goon" like so many other kids. This guy actually targeted me for being nearsighted. He got so much delight in walking right up to me at the cafeteria, in hallways, out on the sports field and around our neighborhood, and then he'd shout in my face, "MORGAN! CAN YOU SEE ME?!?" There was usually some spittle involved.

This persisted past grade school and well into high school. And then the really gruesome thing that I warned you about happened. You can stop reading now, if you want to.

He had a job working in this yuppie market in our hometown. At the end of the day, they'd transport prepared foods to a basement fridge from the main floor via a dumbwaiter. One day this kid who'd bullied me for years was high at work (on marijuana, in case you're curious) and he'd called for the dumbwaiter.

Maybe it seemed to be taking a long time to arrive, maybe he was just goofing with his friends, and for kicks he stuck his head into the dumbwaiter shaft and looked up to see what was holding it up.

That's when the dumbwaiter came down and crushed his head.

I never wished this to happen to anyone who has ever bullied me before of since. Yet I felt guilty, as if I had wished it and then it actually happened. Fact is, I never really thought about this particular kid until he was up in my face, yelling at me to ridicule my nearsightedness, and now I felt guilty for not thinking about him. And then he was gone. And then I did think about him. I can still hear his loud voice, smell his adolescent breath, and feel his saliva spattering against my face.

And yes, I could see him.

Playing With Matches

This winter my mom sent me 8 pairs of socks, all the same brand, and each pair is a different color. I love these socks, but every time I do laundry, pairing each sock up with its mate can be trying for the cone-deficient. Maybe you can help:

Leave your colorful insights in the comments below. 

(And thanks mom.)

Double Dissed

I just spent a few days with laryngitis. At its worst, I couldn't speak at all, and so I went out with a stack of index cards and a Sharpie in my pocket. Whenever someone said "hi" to me, I held up the first card, which read, "I have laryngitis." If they wanted to converse more, I could write notes on the index cards.

It was interesting navigating the world with two disabilities, one chronic that I keep less visible (having low vision) and one temporary that I chose to make visible (not being able to speak). And once we broke the ice, laryngitis had its perks. People found communicating with me to be interesting and entertaining, and I played this up, making it into something of a performance. In the park, someone offered to buy me sorbet, and then the guy selling it refused to take any money for it. When "talking" to my friend who works with visually impaired people, I wrote on a card, "We're all temporarily abled," and then she told me that this laryngitis might be more of an ability than a disability for me because I could take my time to say what I wanted to say, draw pictures, and then have a record of that correspondence.

On the way home from my night out as a laryngite, I gave out some of these cards to people, odd anthropoetic documents of my conversations with others. When the trolley reached my stop, I rang the bell, but the driver shut the doors before I could get off. I called out, "Rear door!" but he couldn't hear me because at the end of the day, I had no voice.

What Would Owen Meany Do?

As anyone who's read A Prayer for Owen Meany knows, absorbing lots of text in all capital letters can be intense. John Irving was clearly aware of this when he wrote that novel in 1989. Irving used all caps to augment everything spoken or written by Owen Meany, a precocious adolescent whose voice and stature set him apart from everyone else in the book. Could Irving have known that, just a few years later, writing in ALL CAPS would become a major faux pas on this newfangled thing called The Internet? That ALL CAPS would signify the text equivalent of shouting and even brand its purveyors as wingnutty wackos whose very words and ideas were to be ignored altogether? Reading Owen Meany pre- and post-Internet are two very different experiences to be sure, and if you, dear reader, are seeing these words online, I regret to inform you, that it's too late to undergo the former: you've already been corrupted.

Etiquette aside, there are also design considerations that make a case against using all caps. The user experience blog UX Movement explains how contrast is an important factor in presenting blocks of text, not just in size, font and color, but also in s h a p e. Take the word, "shape" and the word "style" each printed in three formats here:

shape          style

Shape          Style

  SHAPE          STYLE

Notice how the word in ALL CAPS stand out from those in lowercase or Title Case, but not from each other. UX Movement's article points out that words consisting of mostly lowercase letters have greater variance in terms of shape because some of the letters possess ascenders (b, d, f, h, i, k, l and t), descenders (g, p, q, and y) or bother (j) that make whole words of similar length more identifiable from each other, whereas words in ALL CAPS tend to form a more uniform, rectangular shape, as in the words SHAPE and STYLE.

But what about readers who have low vision? As a person with low vision, I type in standard English sentence case, but my handwriting is rarely contains any lowercase letters. Instead, I print in all caps as I was taught in drafting and cartooning classes I attended in 8th and 9th grade. My handwriting, at its best, looks like something you'd see in a high-caliber comic book or on an architectural blueprint. I do this because, for me, it's easier to see. Online and in printed publications I would never type in all caps, and I find reading sentences in all caps to be as stressful as when someone is physically shouting at me.

So, what would Owen Meany do had he lived in the Information Age instead of the Cold War Era in which Irving set his book? Would Meany have relented, toned down his voice and conformed to the conventions of etiquette and design dictated by Internet 101? And what does that say about those of us who must occasionally defy these conventions for the sake of accessibility? I'll touch on that in a future post about all caps—STAY TUNED.