In Korea, the rules are different(Elephant's Game, Part 2)

The Korean spa has everything: dry and steam saunas, three temperature of pools, the Jade Room, the Salt Room, and the Charcoal Room. And then there's the lounge with its stacks of bad magazines, a couple of computers, and a board game table with one board on it. On one side of that board is the game of Go, and on the other side is Korean Chess.

This is wrong. Don't set up your board this way.

I sat there, trying to remember how to set up the pieces, still struggling with the characters. Thinking that I maybe had it right, I showed my friends who'd never seen the game, and I explained the rules as I knew them. They pointed out that I'd mixed two characters up on the Blue side, and so I switched them, but kept switching them the wrong way round. It was as if I had a western chess set but couldn't tell the difference between Rooks and Bishops, and so set up the board with both Rooks on the Queen's side and both Bishops on the King's, and then made it so that they alternated Rook / Bishop / Rook / Bishop instead of having Rooks in the corners and Bishops toward the middle.

Turns out I'd got it wrong for other reasons, one being that Korea's game of Janggi is a little different from the Chinese game Xiangqi that I grew up with. Some characters on the pieces are different, as is their movement and placement andon the board. Here are the boards with the starting setups for both games. China's Xiangqi is on the left, and Korea's Janggi on the right:

Are these differences subtle to the normal western eye, or just to one that has difficulty seeing in general?

Chinese Xiangqi pieces for both Red and Black sides:
Generals, Guards, Elephants, Horses, Chariots, Cannons, Soldiers.

The same pieces from Korean Janggi.

Why I Stopped Studying Mandarin(Elephant's Game, Part 1)

My best friend in middle school was from Taiwan. I spent most afternoons at his house where he taught me to play a game that he called Chinese Chess. 

My own Xiangqi board showing the
traditional characters on the red side
and universal glyphs on the black side.

In Mandarin the game is called Xiangqi, meaning "Elephant's Game." It evolved from an Indian board game that's also the ancestor of the chess played more widely in the rest of the world. My friend always won, in part because he'd grown up with this game and better grasped its strategy. But his advantage also came from the pieces being flat discs marked with Chinese characters, and one needs to discern each character to know which piece is which. 

My middle school friend was pretty good at teaching me: "You can remember that ⾺ is the Horse because of these four little brush strokes and a horse has four legs. And the bottom of 象 looks like an elephant's trunk." But the characters in Xiangqi are different for each side, and no matter how many times he went over which was what, I kept confusing them.

In high school I took a course in Mandarin. The first semester was easy: I'm adept at imitating accents and thrived off of Mandarin's nuanced consonants and tonal vowels, so learning spoken vocabulary and building that into sentences was fun and I found opportunities to speak my bits of Mandarin with people around the city. But when the second semester brought in Chinese's characters, I still had trouble discerning them because I just couldn't see them well enough to tell the more complicated characters apart. So I struggled, and at the end of that first year, I stopped studying Mandarin.

I still play Xiangqi, but made stickers for the pieces' non-Chinese symbols. And now I wonder: Do people who have low vision who grow up with Chinese struggle the same way I do in telling these characters apart? Or is my impediment more linguistic than visual?

Passive, Perhaps

Having returned to writing about my eyesight every day makes me more conscious of vision-related occurrences.

Today I met with my current co-facilitators and told them about my experiences from Tuesday and asked for support when it comes to calling on people. Because the workshop is about race, undoing racism, and about being a good ally, my colleague drew parallels between those who neglect the needs of people of color to those who neglect the needs of people with dis/abilities: if the former is engaging in passive racism, then the latter would be engaging in passive ablism.

"I don't see it that way," I said, "because they are not doing that thing thing to me." And we moved on.

As I write this 12 hours later, I kind of disagree with the me that said that 12 hours ago. If someone doesn't support me once, or twice, or a few times, sure, that's just not knowing what I need. But if I tell them again and again, and they continue to not support me, then that is neglect and it's ablism. Passive, perhaps, unless they really have it in for me.

The Teacher's Pet's Pet

Every Wednesday I go to my yoga teacher's home where she runs an advanced practice for fellow yoga teachers. I set up my mat right next to hers, and I think that always practicing at her side makes me something of a teacher's pet. But I wonder if that's true and why. Do I practice close to my teacher because I want to be a teacher's pet, or because I'm visually impaired and just need to see what's going on? Does having this dis/ability make me more likely to play the part of teachers pet, to be perceived as a teacher's pet, and/or to be treated like a teacher's pet? And what about the actual teacher's pet? You know, the cat who always comes in toward the end of class and gets in the way of everyone trying to hop up into forearm stands? Does the fact that I'm the one who always picks him up and puts him in the other room make me more of a teacher's pet? Or am I just the teacher's pet's pet?

Big Blurry Circles

Tonight I facilitated a workshop with a friend. There were 40 people there, and when we stood in the circle, it filled an entire 30×50-foot room.

Early in the evening, I sat at the front desk to help with sign-in, but I couldn't really see people's names on the sign-in sheet, even though I'd printed it out.

In our first activity, I had everyone go around and say their name and make a movement that we'd all repeat. I almost always start groups of people who don't know each other with this activity, because the movement helps us remember names, tells us something about that person and how they're feeling, and gets us all to move. I also can't really see the people across the circle, and tend to rely more on the sound of their voice to know who they are, and can really only repeat big, obvious movements with accuracy.

Next, my co-facilitator was reading some things off a sheet of paper that the group sat and faced. People raised their hands to speak and somehow I ended up being the one calling on them. But I could barely see the people and their hands Then we passed around these index cards for everyone to read. "Does everyone have a card?" I asked after about 30 seconds, and my co-facilitator leaned over and said, "They're still going around." It took along time for 40 people to distribute index cards. "How about now?" Nope.

Throughout the evening I really felt on the margins being seeing and not-seeing, passing and not passing, and I wonder how people who don't know me perceived me. I also wondered how people who do know me perceived me: as a person capable of doing this work without much effort, or as a person who really could use some help sometimes.

Opera glasses ain't just for operas anymore

Tonight my friend invited me to a show in someone's house. It was a mix of dance and theatre and other performing arts. Each performer took the stage, just 15 feet away from me, but I couldn't see a thing. And as the rest of the audience laughed at everything happening onstage, I sat there wishing I could see what was so funny.

I see lots of performance, and this happens all the time. And while I've learned to bring binoculars to big theaters and outdoor spaces, this was a show in a living room—we were right there, so close to each other. Wouldn't it have been weird for me to whip out these opera glasses to see something 15 feet away? Even in a huge auditorium, someone sitting nearby will poke fun at me: "What are you trying to do? Read the tags on the actors' trousers?" And then I either have to make that person feel like a jerk by outing myself as visually impaired, or sit there feeling like a freak for being kinda blind.

Then there's this thing: My being a man peering at a bunch of female performers through binoculars has this other creepy connotation. So opera glasses or no, I am damned.

Thankfully my friend gave me the play-by-play of what I missed after the show. And in some sense, I'm not actually missing anything. I just see it differently. 

Illegible + Unintelligible = The Same Sandwich

My favorite neighborhood eateries are run by artists. Each establishment offers its own aesthetics through a certain curation of cuisine and atmosphere. There's usually good music playing on the stereo, local work by a roster of painters and printmakers on the walls, and bulletin boards plastered with tons of flyers for community happenings. The food and drink these places present are little works of cheap, culinary art, reliably tasty and satisfyingly filling. And among the art adorning the walls are some bits related to the food, most notably the menu and a mish-mosh of notes tacked onto that menu as addenda. It's truly beautiful. And utterly unreadable to a visually impaired person.

I use "unreadable" as an umbrella term that has two distinct parts. One part is "illegible", meaning that I can't read it because the writing is too far away, or the fort is too irregular, thin, or faded. This is an optical thing, meaning the part of vision that happens in the eye can't distinguish the images being presented to it.

The other half of "unreadable" is "unintelligible", meaning that my I can't process what's going on because having all these add-on notes and things arranged in a nonlinear, scattered fashion makes stuff hard to read, even when the font is legible. This is a cerebral thing, related to the part of vision that happens in the brain not distinguishing the information being presented to it.

Low vision can be a cocktail of optical and cerebral malfunction. People who were once blind and then obtained vision often cannot deal with the brain part of seeing, even though their eyes have been made to work fine.  My situation is less extreme, and I've taken to snapping pictures of menus. I use my phone's screen to magnify each menu item, but then sometimes can't make sense of what I see. Meanwhile, everyone around is ordering, and pretty soon it's my turn.

"What''l you have?"

The same sandwich I had last time.

Marooned in Manyunk

My friend and I took the train out to Manyunk. If this was NYC or Chicago, a trip like that would be a simple ride on the subway or L. But this is Philly, and that means taking SEPTA's Regional Rail train.

We stood in a long line to buy our tickets, and then had to jump out to make our train on time. I had a disabled fare ticket, but my friend was charged extra for buying his ticket on the train. "You know if you'd bought this as the station, you'd have saved money." Oh yes, we knew.

We sat and talked, and I let my friend keep track of the stops because I couldn't see the map or the display that posts the stops, and the conductor was little bit mumbly. Then my friend said, "This is Manyunk," and we hopped off the train...but it wasn't Manyunk! So we pried the door to the train open and got back on. By now we were getting to be good friends with the conductor.

Something like that is actually less likely to happen when I take public transit alone. I work harder to know where I am andin this post and also in this other post, that can be a lot of work. It's so much work, that I'll gladly give it up to someone who can see to tell me where I am. But yeah, even the sighted make mistakes sometimes.
, as I've written

Superpowers Beat Paper

I often write the word "dis/ability" with that slash in there to designate that those of us with disabilities sometime possess abilities that other lack. Call them superpowers. I do.

My friends Beth and Meridian. circa 2001.
FYI: This story is not about either of
them, nor about Beth's piñata, seen here.

Playing piñata is a unique sport. There's a spirit of cooperation—we're all working together to smack that thing, to bust it open so that we can get at the good stuff inside. But there's also a little competition in that some of us will hit it, some won't, and ultimately one person will deliver the final plow that sents bits of paper and candy flying everywhere.

Piñatas possess a special place in my heart. When the blindfold gets wrapped around my face, the broomstick placed in my hands, and I'm spun around to stagger toward that swaying paper mâché target in the air, I feel at home. And I feel super. Over the years I've cultivated an advantage in learning to use my other senses like superpowers to find that piñata in the darkness behind the blindfold. I get my bearings in space, feel the air and objects around me. I listen, I hear. I even smell and taste. And then I swing.

At one person's piñata party, I did this a little too well. I was the first at bat, and also the last. That's right—I took down the piñata so fast that no one else even got to play. In the moment I felt great because the "dis" was diminished by the "ability" and I got to flaunt my superpowers. But in hindsight I'm flooded with remorse, for I ignored Stan Lee's Law of "With great power comes great responsibility," like every good superhero must.

So if you're reading this birthday girl, I owe you a piñata, and several chances for you to swing.

Blind Love #2: I'm sort of seeing someone

Sometimes I'm dating someone. Sometimes I'm not. And often we're somewhere in between.

In that in-between state, someone I was dating once said, "I was across the street from your house. I could see you, but you couldn't see me."

This difference in vision explains a lot. About seeing relationships differently. And about existing perpetually in the in-between. Seeing someone...sort of.

Wrong Hunch

I have a new friend who tends to hunch. I thought that her stooped posture was maybe because she's tall, but then I found out she's extremely nearsighted. Guess my hunch was wrong about her hunch.

Triple Dissed

Funny how this year, as I've been focusing on my primary dis/ability, I've taken on some others for short stretches of time. Back in May I was walking with a cane for a couple weeks, and in April I lost my voice for a few days. And now I can't hear out of one ear due to an infection brought on by a flu that had me totally immobile for a spell.

Not seeing so well can be a bit disorienting, but hearing every sound come at me from one sound only amplifies that experience. Usually when someone calls my name, I know the general direction the voice is coming from and can wave over that way regardless of whether or not I see who it is. But that's blown for now. 

I'm realizing why a lot of people adapting to shifts in ability prefer to stay home: it's a source of embarrassment, a pain to explain, and very vulnerable territory both physically, socially, and emotionally. Going to the clinic to get my ears examined turned me into a three-ring circus of dis/ability, performed multiple times for receptionists and medical assistants and doctors. I need help filling out the form and repeat what you said please and boy do my joints ache right now. 

I've learned not to apologize for any of this stuff: I never say "sorry" for not being able to see because that's not my fault. Some of the people who work at these places are learning not to apologize either, and that's good because my dis/abilities are not their fault either. An apology is an empty substitute for help and as a person with a dis/ability (or two, or three, depending on the day) I'll take a singular act of help over a hundred apologies.

Good news is: flu is gone, no more body aches, but I still can only hear out of half of my ears. And of course I can half-see out of both of my eyes.

Stay tuned!

Watch My Bag

Who is the thief in this coffeeshop?

It's not your fault. It might be mine.

In a café some months ago a friend asked me to watch her bag while she went to the restroom. What was to watch? Especially in the years since that corner of our neighborhood got gentrified, right? No one goes into other people's purses anymore, especially in a bustling, brightly lit café. So I may have gone up to the counter to refill my tea, but only for a moment.

And then, a year later, came CONES, the show I made about my vision loss. And my friend saw it and said, "Now I know how that happened—How I asked you to watch my bag and all my credit cards got stolen out of it."

Huh?

"Yeah, I guess I shouldn't asked you to do that."

Hmm...

Let's return to the scene of the crime: A table at a coffee shop (that's what we used to call them before gentrification) with two chairs facing each other just three feet apart. My friend asks me to watch her bag, which is just three feet from my face, and I have no trace of being visually impaired—I am passing for able-bodied and, in all honesty, would clearly see if anyone were to start rifling through that bag for anything. Still, 30 minutes later, sometime after we'd had coffee and tea, my friend went to use her credit card at the grocery store, and it was gone.

Conclusions: People still steal stuff in gentrified neighborhoods. No one stole that card out from under my nose, they stole it from behind my back. And this did not happen because of my dis/ability, it happened because I got careless for a moment, and it only takes a moment for someone to steal something out of someone's bag.

Sorry about that.

So, who wants to go get coffee with me?
————————————————
Photo of "Awaken the Mud" by Beth Nixon. See her work at www.ramshackleenterprises.net.

Spicy Ally

I love cooking. I taught myself to cook when I went vegan more than 20 years ago. A big part of that was learning how to use spices. But as my vision has waned, I use fewer spices in my cooking, mostly because I can't see the labels on the spice jars.

This week a friend who was staying with me changed all that with some masking tape, a magic marker, and a little time spent organizing:

Big Change

Sometimes the clerk doesn't tell me my total.

"How much is it?"

The clerk points to the display on the register. I can't read it. In my wallet are a bunch of smaller bills that would probably cover it, but I hand over the bigger bills and let them make change.

I could say, "Can you read me the total? I can't see so well."

But I never do.

I'm Certainly Not Stoned

Under bright lights, I have to squint. Especially fluorescents. Like these at Target:

Clerk to me: "You seem tired. "

Me to clerk: "It's the lights."

Clerk to my friend: "I hope he's not driving because I don't believe him that he's just tired."

My friend to clerk: "No, it's the lights."

Not the first time that this has happened. And probably not the last.

Hot Noir

After a hiatus, I'm reopening this blog to resume reporting on my own vision loss and share news around the solo show I've made about it. One piece of news is that I'll perform the show again on December 6th. Get info for that here.

Another bit of news is that I'll be sharing space at a collectively run studio in a big factory building. The building's management has simplified the heating situation by installing pellet stoves for all their tenants—just buy your own pellets and you can heat your own space. Here's what the stove's control panel display looks like:

The contrast on this screen is far to low for me to see, meaning that I can't operate the stove. I wondered if taking a picture of it would make it visible, and then saw a camera setting on my phone called "noir". It made the display look like this:

Totally visible to me! I always loved film noir for the same reasons. The high contrast between black and white is easier for me to see.

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.