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.

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.

Blind Film #10: They Live

The promise of glasses, as a way to see what's right in front of our faces, has never been more clear than Roddy Piper's revelation in the 1988 cult classic, They Live:

Blind Film #9: Genghis Blues

Paul Pena's story is a good one. With a background playing Portuguese music, American blues and rock, he became obsessed with Tuvan throat singing back when few westerners had ever heard of it. My pick for most moving scene from this film is when Pena uses a Braille reader on a page of Tuvan text, then on a Tuvan-Russian dictionary before he can translate the Russian translation into English, I identify with the obsessive quality that drives someone with low vision to take great pains (and yes, it is a little bit painful) to do something like that.

R.I.P. Paul Pena and Kongar-Ol Ondar. Thanks for bringing so many of the planet's great musicians together and for sharing your brilliant artistic visions with the world.

The Evolution of Devolution

Blind Film Special: Tommy Edison

The reel Tommy Edison. Who needs lightbulbs? Let this guy guide you through the dark:


Check out his YouTube channel, and his other YouTube channel.

Blue Way

We had some nice breakthroughs in rehearsal today. And then we realized that Blue Man Group did it all first:

Blind Song #10: Kiss Me, I'm Blindish

In an age when it's cool to say that this band sucks, I say that this song is incredible.

I wonder what Gene Simmons was inspired by when he wrote this more than 40 years ago. My theory is that he was 23 at the time and writing about a teenage girl, but by making the protagonist 93-year-old man who's losing his vision attempts to swap some of the creepiness for absurdity. Does it succeed?

Also look for all the ways that "blind" could be applied to the crowd—there's a patriotic fervor to their fandom. Also the hallucinatory quality created by the replicated makeup on the members of Melbourne's Symphony backing up the band is reminiscent of the black-and-white dazzle camouflage used by Britain's navy during World War I, and by zebras for as long as zebras have been zebras:

Blind Film #5: Scent of Machismo

Pacino plays the blind card to win Best Actor at 1992's Academy Awards. Scent of a Woman's pity party plot revolves around a macho ex-army colonel whose manhood has been besmirched by his disability. This scene's extra asset is a pre-gentrified view of Brooklyn's DUMBO neighborhood. You'd hit half of Etsy if you drove like this down there today:

My favorite part of this scene is at the end when the ex-army colonel uses his privilege to mask his disability. The same year this came out, Odd Squad's video for "Can't See It" also featured clips of a blind man driving, but unlike Al Pacino, MC Rob Quest is actually blind.

Sonar in Stereo

"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."

Links:

• Guy Raz's 9-minute piece on Daniel Kish for Morning Edition
• Alix Spiegel and Lulu Miller's hour-long piece from Inviibilia/This American Life

More about Kish, Bates, rods, cones and the authors of these posts soon to come.

Blind Film #4: I'm Bah-Lined!

Anchorman 2?
Amazing.
Watch the scene.
Then read this review on the American Foundation for the Blind's website.

Face Blind Sometimes

Self portrait by face blind artist Chuck Close.

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.

Blind Song #8: "This is how I see you"

Right up there with Mason's earlier post featuring Christine Ha, the video for Lionel Richie's grammy-winning hit "Hello" always got me. Laura Carrington, a fully sighted actor, stars as a blind art student stalked by the love-struck Richie.

"Hello," he croons on an anonymous late-nite phone call, "is it me you're looking for?"

It falls somewhere between tearjerkingly touching and completely creepy, especially when Carrington turns the tables on Richie at the end:

The bust of Richie featured in the video has been the subject of derision in many media. Here's Scottish art student Dylan McCaughtry with his own Lionel bust that he made while blindfolded:

 

A more appetizing version is this 20-pounder, rendered in chocolate:

For links to these and more, check out "The clay head from the Lionel Richie 'Hello' video" Facebook page.

Blind Song #7: Would You Rather...

Etta James' turn to ask:

"Would you rather go blind,
or see someone you love walk away from you?"

It's an intense proposition, and Beyoncé gets to amp up the melodrama in this cover version—Thanks Hollywood:



What about you? Would you rather go blind than see someone you love walk away from you? If not, you'd be sighted and single, otherwise you'd be blind…and single? Or do you get to keep your relationship in exchange for losing your vision? Leave your answers in the comments below.

No Read, No Reed

In 4th grade I took up clarinet, but gave it up three years later when I got braces. Too much metal in my mouth.

In my early 20s I found a saxophone at a yard sale. They were offering free lessons at a school in Chicago for anyone who passed a music reading test. But by then my vision was failing and I couldn't read sheet music, so I failed the test.

Now I can make noises on a single-reed instrument, but jumping in a band and following along with the sheet music is out of the question, and Rasaan Roland Kirk I am not. 

Ha