Remembering David Rakoff

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.

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?

More Than a Conch-Fondler

Today a programme on BBC Radio 4 made brief mention of a scientist named Rumphius whom they referred to as, "the blind shell collector." I'd never heard of him, so I looked him up. Here's what Wikipedia currently offers:

Georg Eberhard Rumphius (originally: Rumpf; baptized c. November 1, 1627–June 15, 1702) was a German-born botanist employed by the Dutch East India Company in what is now eastern Indonesia, and is best known for his work Herbarium Amboinense produced in the face of severe personal tragedies, including the death of his wife and a daughter in an earthquake, going blind from glaucoma, loss of his library and manuscripts in major fire, and losing early copies of his book when the ship carrying it was sunk. In addition to his major contributions to plant systematics, he is also remembered for his skills as an ethnographer and his frequent defense of Ambonese peoples against colonialism.

That's a lot more than the Beeb's brief mention that conjured visions of an old man with sunken eyes fondling a conch.

I wonder about the chronology of Rumphius's life, when his blindness came on, and how he correlated his own personal struggles and tragedies of the with those of the islanders being colonized by the Dutch. I also wonder this stuff about myself and members of my family who are visually impaired and have fought for social justice.

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.

Seeing Song #2: The (blind?) mouse played a daffodil

Yesterday's post summoned the chorus to this song:

I can see them, they can't see me,
I feel out of sight,
I can see them, they can't see me,
Much to my delight.

I always imagined the singer hiding up a tree or in a thicket, concealed from the view of these færie-like animals dancing and playing music. But now I'm envisioning the animals in this song all wearing dark glasses beyond which they can see little or nothing.



After all, there have been songs about blind mice.
Who's to say that any of these animals can see?

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.

Blind Book #2: The Country of the Blind

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: