After a one-year break from this blog about vision, I think I'm back. Why the pause? Not because I had nothing to write about—rather, there several vision-related instances that occur around me every day.
I started this blog as dramaturgy for my solo show, CONES, about losing my vision to cone-rod dystrophy. In the past year the show was a keynote performance at both Cabrini University and Episcopal Academy, just outside of Philadelphia, and we brought up to Vermont for audiences at Camp Common Ground and Goddard College. I did a lengthy interview about the show on WGDR (below), and held a matinee for employees and clients of the New Jersey Commission for the Blind and Visually Impaired.
Next up: Temple University's Institute on Dis/abilities hosts CONES for a Monday morning event on April 24th. If you are in Philly and free, please come! Till then, read this blog—I've got lots to say every day.
In 2012 I saw David Rakoff give this talk and performance, three months before he died. I just heard it again, rebroadcast on the radio, and found a video of it that I've put at the bottom of this post. A lot of what he says resonates with me both as a person of difference and as a person of dis/ability:
It was an exercise in humiliation and trying to make myself as invisible as possible.
That was how he felt going to dance classes as a young man. That was how I felt in gym class as a kid. The difference between us that as a kid in gym class, I was coming to terms with disability, and the young David Rakoff wasn't. Not yet.
On becoming dis/abled, he says:
Everybody loses ability—everybody loses ability as they age. If you're lucky, this happens over the course of a few decades.
David Rakoff's "if your lucky" referred to his cancer and resulting string of operations, the last of which left him with a flail limb, meaning that he could neither move nor feel anything in his left arm. His descriptions for accommodating to this disability, though different from those that a person with low vision performs, are pretty familiar in their perfunctory absurdity:
If I retained anything from dancing, it's a physical precision that certainly helps in my new daily one-armed tasks. They're the same as my old two-armed chores. They're not epic or horrifying. Some of them don't even take much longer, but they're all to one degree or another, more annoying than they used to be, requiring planning, strategy, and a certain enhanced gracefulness.
Oral hygiene: Hold the handle of the toothbrush between your teeth the way FDR or Burgess Meredith playing The Penguin bit down on their cigarette holders. Put the toothpaste on the brush, recap the tube, put it away... Then reverse the brush and put the bristles in your mouth, proceed.
Washing your right arm: Soap up your right thigh in the shower, put your foot up on the edge of the tub, and then move your arm over your soapy lower limb back and forth like an old-timey barbershop razor strop.
Grating cheese: Get a pot with a looped handle, the heavier the better. This will anchor the bowl that you want the cheese to go into. Put the bowl into the pot. Now take a wooden spoon and feed it through the handle of the grater and the loop of the pot, and then tuck the end down into the waistband of your jeans. (Clean underpants are a good idea.) Jam yourself up against the kitchen counter and go to town.
In memory, here's David Rakoff's complete talk and performance:
After he died, This American Life ran an hour-long tribute to David Rakoff's life and work. Listen here.
One short story, told three different ways: print, radio, and animated film.
H.G. Wells mastered science fiction by generating stories from simple questions. Questions like, "What would a man do if he became invisible?" or "What if our planet were attacked by aliens?" or "What would life on Earth be like many millennia in the future?" yielded some the most well-known novels, radio plays, and films in over a century of sci fi. Wells' questions also spun into shorter stories, with "what-ifs" that, like The Time Machine, put an ordinary person from his day into another world. The exploration is twofold in these stories: the protagonist must contend with the strangeness of that world and its inhabitants who, in turn, try to figure out their unusual visitor. As readers, we become a third fold, interpreting the experiences on both sides of that relationship.
"The Country of the Blind" first ran as a magazine piece in 1904. Wells later published it with a very different ending, and every adaptation has hence taken liberties with it, leaving it up to readers (or viewers or listeners) to guess how any given version will end. The story lends itself to the sightless realm of audio theatre, and was perfect fodder for the radio suspense series Escape, which dramatized it in 1947. This restored version of that broadcast is pretty faithful to Wells' original, though the tagline about "a band of blind men who want your eyes" misses the essence of the piece by over-demonizing the story's blind populace. Listen and discern, as Wells did, how "In the country of the blind, the one-eyed man is not king."
This wordless 1995 Russian animation took even greater liberties with the original story and all sorts of stuff could be read into it as post-Soviet, post-Industrial, and even post-Medieval allegory. This all-pictures-no-words version makes for a nice counterpoint to radio, though any blind person who "saw" would think it funny how the people are depicted moving about in a place completely familiar to them:
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.
Anna Lyndsey isn't blind, but she lives in the dark because of her acute photosensitive seborrhoeic dermatitis, an illness that makes all contact with light feel like a blowtorch on her skin. While most blind folks can walk out into the light, they just can't see much, Lyndsey could see were she able to exist in the light. Have a listen to this chapter, "Metaphor", in which she reviews a handful of audiobooks whose protagonists have something in common with her. She also reviews a couple of new age healers and offers a game:
Games to Play in the Dark 5: Scribe
This is a game to play on your own, when talking books have palled, when you have no visitors in prospect, when boredom eats your brain.
You will need a large bound notebook and a pencil. A bound notebook so that your pages are disciplined and do not become entangled. A pencil, because a pen could run out and in the dark you will not be able to tell.
Pick up your pencil and open your notebook.
Place the thumb of your non-writing hand on the page beneath the start of the first line.
Your thumb will act as a marker, so that there will be space between each line and the next.
Write.
Write what?
Write what you know. Isn't that what they say? What you know is the darkness.
And as you begin to form words on the page, the darkness around you moves. It starts to gather, to circle, to form a vortex round the end of your pencil, and then — down the pencil's black centre it pours.
It is unstoppable. It flows faster and faster, funneling down that slim conductive wand, erupting on to the page, staining its purity with straggling struggling words.
Capitalizing on the web's weird dress fetish the other day, an inaccurate Linkedin article about tetrachromacy (having 4 types of retinal cone cells instead of the usual 3) wormed its way off the internet and into 3 million people's heads. The article offered a bar of 39 web-safe colors (pictured above) and told readers that the number of colors they saw indicated the makeup of their cone cells. This article was so misleading, I refrain from even linking to it, but I will point you to this video that gives a fun 5-minute crash-course in cone science. I've also posted some reputable sources at the bottom of this post.
How (aside from spelling and grammatical errors) was said Linkedin article inaccurate? Let me count the ways:
The title statement, "25% of the people [sic] have a 4th cone"is false. Only the half of us with two X chromosomes (primarily women) are eligible to have four types of cone cells (RGB+1), and of these a possible 12% are tetrachromats, meaning that only 6% of "the people" (half of 12%) can have a 4th cone. Of these 6%, very few are functioning tetrachromats: that "+1" cone is akin to the low-functioning mutant cone in X-linked colorblindness (see #3 below).
An online rainbow will NOT tell you if you have a 4th cone. Because color monitors are trichromatic (RGB) like the cones in our eyes, they do not produce colors that trichromats cannot see.
The statement, "You are dichromats, like dogs," is not true for all people who have trouble differentiating color.In common X-linked color blindness, a third cone is present instead of the red or green cone, it's just low-functioning. Many color-impaired people have other retinal disorders, such as cone dystrophy or macular degeneration, which can limit perception of color. They are not dichromts.
Saying that colorblind people, "are likely to wear black, beige and blue," is baloney. Colorblind people often ask color-seeing friends to help them pick out and label clothes and advise them as to what matches with what. Or they just go through life wearing whatever.
Also false: "25% of the population is dichromat" and, "50% of the population is trichromat." Almost everyone (at least 94%) is trichromatic.
Saying that tetrachromats are "irritated by yellow" and therefore own no yellow clothes is a sham Just as with the "black, beige and blue" statement from #4, the author is picking colors that tend to be popular or unpopular and misleading readers into thinking that they are retinal mutants.
Finally, who in the world puts a winky-face with its tongue hanging out in the title of their article and expects it to be taken seriously? 'Nuff said.
"Mike May is a skydiving, downhill skiing, daredevil of a man who just so happens to be blind. And then one day, he is faced with his biggest challenge."
Fascinating piece from the fantastic podcast, Snap Judgment.
I recently posted a video featuring people with faces painted like the band KISS. The clip hgihlighted three forms of figurative blindness: one mentioned in the song, one perpetrated by the fans, and third as a quasi-hallucination created by the makeup. While one person done up in that signature black-and-white face paint may look iconic (and even ironic), another effect occurs when entire crowds do it together: the individual disappears into the group, and the group participates in a visual effect called disruptive camouflage.
Disruptive camouflage occurs in nature, famously in zebra herds whose converging stripes throw off predators as to their number, individual identity, and direction they're facing. The Brits have taken two important cues from the zebra: the crosswalk (which they call a "zebra crossing') and a practice of painting ships that came about in World War I when they hired painters to decorate both war and commercial vessels with striped patterns. This was also an attempt to throw off predators—in this case German submarines, whose crew had to estimate a ship's distance and course before firing a torpedo at it. This "dazzle camouflage" could fool the enemy into thinking that a ship was turning or moving in a direction that it wasn't, throwing off torpedo calculations by as much as 55°.
A person with a retinal condition might see many things as if they were decorated by a dazzle camoufleur, only the cause of disruption is not tactical, it's the consequence of retinal cells being interrupted. The result is gaps in vision that the brain fills in with made-up stuff, including the whos, whats, how-manys, how-fars and where's-this-goings of people and things of every stripe.
The brilliant podcast 99% Invisible has an episode on dazzle camouflage. Listen to it here.
"When a sighted child gets hurt, we consider it to be unfortunate.
When a blind child gets hurt, we consider it to be tragic."
Before you read any further, put on your headphones and listen to this radio story from 2011. That was when I first learned of Daniel Kish.
Kish, who is blind, uses echolocation to create a mental image of his surroundings in the same way that bats or dolphins use their own sonar to navigate through their various dark corners of the world. This interview is truly amazing, not just because it highlights Kish's ability to ride a bike, but also because Guy Raz recorded the whole thing with a binaural microphone, meaning that when I listen to it on headphones, the surround sound effect makes it so that I can actually sense what Kish senses when he echolocates. I literally get the picture.
"So when I walk into a new area, the first thing I do is I take stock of the most prominent features. So in this particular area, the most prominent features would be that building, the umbrella in the middle of this table, and the tree behind me, and the canopy that covers this area. Now, further away to our left is another building that's slightly further away. And this building has a much more defined reflection than this building, which suggests that, a) the building must be at some sort of angle relative to us. and, b) that it must have more texture to it—pillars, alcoves, I don't know, maybe balcony structures."
Listen to that on headphones and you'll see what he's saying.
Kish got much greater exposure when Invisibilia and This American Life co-broadcast this hour-long story about him in early 2015. While it's clear that NPR loves him, a lot of traditionalists in the blind community are a bit freaked out by what he does and his advocacy that other blind folks follow his path. It brings to mind the hatred from the American Optometrical Association toward Dr. William H. Bates for his 1920 book that recommended people improve their vision without using glasses. What Bates was to those of us with low vision, Kish is to folks with no vision. In Kish's words:
"We have supporters, and we have opponents. Any time you have an established convention, the one who comes along and says that it can be done differently, it can be done better, it can be done faster, that person is seen as the renegade. And we are, I think, seen as renegades in many instances. We really want to bring the power of action back into the hands of the consumer, of blind individuals and of their families."
There was this person that I used to see around. But more often, she saw me.
When we'd meet, she knew who I was, but I didn't recognize her, and I saw her take offense, like I didn't find her memorable or important. But really I just couldn't see her that well and needed some clueing in as to who she was.
Someone had told her that I had prosopagnosia, better known as face blindness, a neurological condition where people cannot differentiate people's faces. True that many people with low vision cannot distinguish faces, but this is not prosopagnosia. What I have begins in the eye as an optical distortion, whereas neurological face blindness is a function of the brain, not optics. Even close friends, family members and loved ones can be indistinguishable to people with prosopagnosia, but I do recognize those familiar to me and can tell them apart, including my friends who are identical twins. It's people who I don't know so well that I get confused, and that optical conundrum does indeed become a cerebral muddle.
Despite the difference in diagnosis, prosopagnosia and low vision also share some characteristics, particularly on the social level. People can hide from those of us who have either condition and often wonder who it is we're talking to. The face blind fellow in this Radiolab segment from their show on "Falling" likens his experience to having someone "disappear into the crowd":
Here's a more extensive conversation about prosopagnosia with neuroscientist Oliver Sachs and portrait artist Chuck Close. Close's artistic method of breaking up images into pixelated squares is not unlike how I put together faces when I look at them. I can also relate to what both men say about social strategies around not recognizing people:
Funny how at the end of this segment, Sachs and Close reveal that they share another characteristic: they both see through only one eye, though Sachs has lost his vision in that eye, and Close shuts one eye to prevent himself from seeing double. More about when and why I see through one eye in a future post.
