not not blind

Trump Card

2010-10-11T08:44:00.000-07:00

One of the odd things about parenthood, other than that it's the title of a Ron Howard film that was made into a TV series more than a decade later, is that it trumps nearly everything else in your life. This isn't a secret: if anything, movies underestimate how all-consuming the responsibility can be. But what the movies don't tell you is that, at a point, it just becomes a fact of your existence. I guess that's not quite dramatic enough for Hollywood, but it's humanity at work. You accept that your primary focus in life is no longer you, but your child, and you move on.

So, why the lack of posts in the last (gulp) three months? It's not really from a lack of material to write about: there have been several instances of my not-not-blindness colliding with the seeing world, and I'm hoping to catch up on some of those in the coming weeks. It's also not entirely because of the lack of time, although between taking care of my child and working mostly from home, I'm busier than I've ever been,

No, my silence here has much more to do with a sudden shift in self-identity. Namely, I think of myself as a dad before I think of myself as a blind guy now.

Part of this comes from people's reactions in stores: cashiers spend much more time trying to get my baby to smile than paying attention to the way I lean into the credit card machine, so I don't have to answer questions nearly as often. I certainly don't mind that.

But even without that, my focus has just changed from myself to someone else. It's a little like getting into a long-term relationship, but even then, you're sharing the spotlight with someone else. Having a child takes the spotlight off yourself almost completely. I can imagine some people being terrified of this, but I actually love it more than I can say.

Still, there's a lot to explore about navigating the world with my idiosyncratic eyes, baby-strapped-to-chest or not, and I plan to write about it. And thanks, everyone, for talking back to me!

(That's "talking back" in the good way, not the way my child will learn in a few years.)

The Height of Inaccessibility

2010-07-21T07:13:00.000-07:00

Just to be clear: I have nothing against the wheelchair-bound. I admire anyone who can navigate the world on a set of wheels. That said, their needs and mine do sometimes get confused.

For instance, there was my freshman housing in college. Back then, you had to send in a questionnaire about your living habits and personality, which would supposedly help them choose the perfect roommate for you. I included a note on mine that mentioned that because of my vision, I had a reading device (my CCTV) that floods the room with light when you turn it on. Because of this, I asked that they make sure not to put me in a one-room double, since it would be unfair to my roommate. One-room doubles were rare, and I was perfectly happy to take the much more common two-room triple (as in, two rooms, three people). This seemed like a modest, reasonable request.

When I arrived at college, I found out that I had been assigned a single. Lots of people had requested singles, but I was not among them; I actually wanted a roommate, since I walked into college not knowing anyone. Why me? Why a single?

It took some digging, but eventually I found out that anyone who made a disability claim was automatically given a single in my dorm. Why? Because there was elevator access, and wheelchairs take up a lot of room. This meant that all of us who claimed to have disabilities, from paraplegia and MS to Stargardt's and, believe it or not, ADHD, got singles. This, despite that your average mildly-disabled college freshman would rather have people around, since social situations are among the greater challenges we tend to have. Oops.

I was reminded of this mix-up recently, when for the billionth time I had to duck down to get cash at an ATM. In a growing number of instances, when an ATM stands alone, it is at wheelchair-accessible height. I grant that this is a wonderful thing that allows the wheelchair-bound to gain access to cash on the road, but it also presents an issue for people like me: namely, the tall and partly blind. If the constant bending of my back lands me in a wheelchair, I will not be amused.

OK, maybe a little.

Congratulations?

2010-06-24T06:58:00.000-07:00

So a few weeks ago, a found out that a couple of friends of mine are getting married. I knew this was in the cards, but with the whole new fatherhood thing, I had been out of the loop for a while, and it turned out the proposal had happened back in the early spring. Oops.

My response: write them a hasty email, as soon as possible, to simultaneously congratulate them and apologize for not having done so earlier, particularly those two or three instances that I had actually seen them since.

Well, I got the hasty part right: the email went out the next day. For some reason, though, I didn't get a response that day... or the day after... or a week after.

Had I offended them so much that they couldn't bear to respond? Were they both so busy with their professional and vocational lives that they had no time to check their email, let alone write back? Were they really getting married, or was I that victim of a subtly devious prank that had inadvertently pushed the marriage issue on this unsuspecting couple, leading them to break up, move out, and mutually end all communication?

I did get a reply, a little over a week later. To my relief, it was none of the above: instead, it was a good, old-fashioned eye goof. I had addressed the email to one member of the couple, but the other copy had gone to another friend with the same first name and first initial as the groom-to-be. When the bride-to-be suggested that she might run off with him instead, I informed her that he lived in Boston and was already married. My friend in Boston expressed surprise that he was getting married again. I told them both to call me blind.

Although it feels to me like a not-not-blind story, I have heard of this sort of thing happening to people with normal vision. People reveal trade secrets and private personal information when they type the wrong key and click "send" a little too quickly. This wasn't an issue with snail mail: it's a brand new, super-modern problem that we all seem to be prone to: just think of how often people get accidentally tagged in Facebook.

I guess it's something we all have to be wary of. You might end up marrying two of your friends, too. No good can come of that.

Happy Not-Not-Blind Father's Day

2010-06-20T08:23:00.000-07:00

Since it seems that I'm not the only one out there, I just want to wish my fellow not-not-blind fathers a Happy Father's Day. I'm sure all three of you are having as much fun as I am.

At Least It Was Really Cheese... Right?

2010-06-17T12:20:00.000-07:00

The eyes just love to see what they want to see.

The other day, while we were away, three o' clock rolled around before I realized that I hadn't had lunch yet. This is not something I like to have happen, and when it does, I usually go for the simplest, most easily attainable thing to eat. No exception here.

My thought process went something like this:
1. We had hot dogs and cheeseburgers last night.
2. There are hamburger buns left.
3. There is both American cheese and cheddar cheese as well.
4. There is Miracle Whip.
5. I will make a cheese sandwich.

Solid reasoning, of course. I mean, sure, the hamburger buns were made of highly processed, anything-but-nutritious white flour... and the same could be said about those "singles" (aka "cheese product," according to the label). Hey, the grated cheddar probably wasn't so hot, either. And then there's the Miracle Whip. But this is what happens when you're at someone else's place, and you don't have ready access to actual food.

Singles and cheese bag ready in hand, I opened up the bun bag to take one out. But to my surprise, the bun wasn't detaching the way it should. I could separate two of the buns from the others, but when it came to separating those two, it wasn't really happening. So I figured, "What the hey? I'll just rip them apart." And I did.

It was at this point that I looked down at my newly separated bun... or should I say, buns... and, more to the point, halves of buns. Instead of opening the hamburger bun bag, I had opened the hot dog buns. I had also ripped two perfectly good hot dog buns in half. I probably should have turned on a light in the first place.

For a moment, I contemplated putting the other halves of the buns back into the bag. After all, I wasn't going to eat them. I already had my equivalent of a hamburger bun. It then occurred to me that no one, not even I, could come up with a use for the remaining halves. So I made my awkward sandwich, put the other halves on my plate, and stared at them as I ate.

Did I learn a lesson from all this? I sure did. When preparing lunch, make sure that at least one thing you eat is neither white nor yellow. These colors do not occur in nature.

Blinded by the Night

2010-06-16T07:53:00.000-07:00

I had a scare this weekend.

Back in high school, a friend of mine with RP (sort of the opposite of mine: tunnel vision instead of a blind spot) had to take special precautions at night. He had to stay in well-lit areas, for fear that darkness would blind him. His fears were well-founded: as a kid, he had gotten lost more than once in the dark. It's what we casually refer to as "night blindness," but it's anything but casual to those who have it.

On the flip side, I had always felt pretty confident about my night vision. True, I'm legally blind in both light and dark, but my vision at night had never been all that bad, relatively speaking. I could walk through a forested area with fully sighted friends, past sunset, and get around about as well as anyone else.

When asked how this was possible, doctors would give a pretty simple technical answer: my rods were affected by the Stargardt's, but not the cones. There's a lot of anatomy I'm skipping over here, but the bottom line is that rods pick up levels of light, and cones pick up color. At night, everyone's rods have to work harder to get by, so mine didn't handicap me as much as during the day.

Of course, I now have a slightly different diagnosis, a more severe form of Stargardt's. The new experts tell me that there is some damage to the cones, as well as o the rods. Now, not being a doctor myself, I can make all kinds of guesses about what this will mean, but even they don't have a great handle on it. So, as with other things, night blindness is now on the table. Hooray.

And that leads us to this weekend. We were staying with my partner's parents, in a small town where there isn't a lot of light at night. Once the outside porch light went out, our bedroom went completely dark: I couldn't even see my daughter's crib across the room. Of course, that always happens when the light first goes out, so no big deal.

Come the middle of the night, I tried to get up to get a glass of water. But as I looked around the room, I realized that I still couldn't really see anything. I got out of the bed: still nothing. I started taking slow, careful steps across the room, feeling for walls and the door, and hoping that I wouldn't crash into the crib. Luckily, my blind-man skills are pretty decent, and I made it to the partialy lit hallway without stepping on clothing or a baby.

When we woke up in the morning, I mentioned it to my partner, starting to explain that it might mean a new and fun problem with my vision. But before I got to that part, she responded that when she got up to feed the baby, she couldn't see the crib or anything else: she just guessed. Her vision, aside from a strong prescription, is fine. She has no night blindness, and neither do I; it was just freaking dark.

So... just a scary moment. No need to panic just yet. Funny how a change in prognosis can make you see things that aren't there... or not see things that are there... or see what you can't see... Whatever.

St. Louis Braille

2010-05-28T07:11:00.000-07:00

Forgive me for a little misplaced nostalgia, but I miss the days of Braille. I have never been able to read it - I have no exceptional sense of touch, and I've always been able to see well enough to read at some level - but I love the idea of it.

One of my favorite podcasts, NPR's On the Media, did a great segment on the history, effects, and current state of Braille:

There's only one issue I have with the story, which is that it uses a misleading statistic. When they say that 10% of legally blind people today can read Braille, they're probably right: I'm an example of a typical case. But there are plenty of people like me who should never have learned it in the first place. Being legally blind does NOT mean, with today's technology, that you can't read text. There are plenty of options other than audiobooks. Just wanted to put that out there. That said, when Braille first got started, it was the only option.

Bottom line: before Braille, the blind were employable as panhandlers and oracles, and that was about it. Today people forget to make accommodations for us because they figure we can read with our hands. That's progress, right?

Stumbling Blindly in a New Desert

2010-05-01T07:07:00.000-07:00

A little over a week ago, my daughter was born. Again, just to stay on topic, I won't go into the details of the birth here, but the short version is as follows:

1. Mama had no drugs, nerve blocks, or anything else.
2. Labor lasted a while.
3. The baby came out.
4. Everybody's happy and healthy.

I was able to see her head come out, even recognize a face - the midwife pointed me to the right place, and I was able to get in close enough to see it. Amazing, of course. Cutting the cord was pretty easy -- they practically put the scissors there for me -- but since they had already clamped the cord at either end, it was a little like being the mayor at a ribbon-cutting ceremony for a new shopping mall. (OK, maybe a bit more significance than that.)

There are a bunch of routines that parents go through several times a day: dressing, changing clothes, changing diapers, burping, and feeding, to name a few. Right now, the mom is in charge of feeding, and we take turns for the rest. Some tasks are easier than others for me: I always have a little doubt that I'm getting the diaper exactly right or cleaning every little nook and cranny that I should be, but I ask the fully-sighted people to check my work, and so far I'm doing all right and slowly improving.

As with anything, repetition helps. Just like learning an instrument or a part in a play, practice turns the difficult into the possible into the run-of-the-mill. At the moment, parenting feels possible, and I doubt that it will ever feel run-of-the-mill... but a few small aspects might.

It certainly helps to know that the blood-curdling screams that we're evolved to interpret as the sound of an abused child are, in fact, perfectly normal expressions of momentary dissatisfaction. Few of us start out this life wanting to be change, bathed, or momentarily denied our nourishment, and we are willing to cry bloody murder to express our rage. For that kind of scream, having limited vision doesn't really hurt: it's my average hearing that suffers.

Luckily, she's adorable.

Text Me Not

2010-04-21T06:14:00.000-07:00

When text messaging first burst onto the scene, I thought, "Well, I'll never do that." I did briefly picture a strange parallel universe where mobile phone users, sick of tapping tiny keys, spoke into their phones that converted their voices into text messages, and then would send the text message to another phone which would, in turn, read the message aloud in a Robby-the-Robot voice. Luckily for society at large, we have not yet reached that level of laziness.

Still, texting has become one of the most common forms of communication, and those of us who live between the world of the visually perfect and the completely blind (who have Braille devices for texts) face a dilemma. On the one hand, we want to participate in the world as somewhat normal people, and normal people send out the occasional text. On the other hand, if we send out a text message (which is relatively easy), people might get the wrong idea and text us back. We're left with a tiny message on an electronic screen, and if we don't happen to have a CCTV or a friend who can read it, we're momentarily illiterate. Plus, these things are supposed to be private, right? What to do?

Well, for starters, there's technology. The problem is that technology for people like us moves very slowly. Many of my friends have made the perfectly logical assumption that my phone can read texts aloud, just like my PC at home reads documents and web pages. It does not. I'm not entirely sure such a product exists. If it does, please post something about it - I'd be suriosu to look into it. All I could fins on the web were people asking of such a product exists... a lot of them... which seems to indicate that there's a market.

The biggest surprise to me is that, of all companies, Apple seems to be ahead on this one. They've added their VoiceOver program to the iPhone, an they have a pretty good zoom too. I don't happen to own one, and it's hard to test it out in stores, but at least they're trying.

iPhone Vision Accessibility

For the moment, though, I am mostly texting-incapable. It's not high on my priority list, but it does seem like a pretty easy gap to fill. So what's the deal, phone makers? Low vision product manufacturers? Get on the ball. When you figure things out, send me a text.

Or not.

Waiting

2010-04-18T05:26:00.000-07:00

Waiting is hard.

Waiting tables, for someone like me, is nearly impossible. I've done at in the friendly confines of a summer camp, as a counselor, for our biannual "fancy" dinner where we wait tables in character. Loads of fun. Definitely not the same as being an actual waiter.

Waiting for acceptances or, more often, rejections, is the toughest part of being a writer. You sit there, at the mercy of theater companies and fellowship committees, having put your heart and soul on paper and having no other power to convince them that you're worthy. The only part that makes the wait for college acceptances worse is that, in that case, you actually expect someone to say yes. Woe to he who expects.

And then, there's expecting... waiting for the expected. There are all kinds of divinations that go on on the birthing industry, all kinds of special warning signs that tell you when the baby is nine months, eight weeks, two days, or six hours away. They are all, to put it politely, bull-crap. No one knows. Two days could mean three weeks; six hours could mean twenty minutes. And when predictions are off by that kind of scale, they aren't predictions at all, but wild guesses.

We're left with the pure experience of waiting. Sitting, standing, doing dishes... taking walks for the sake of walks... looking for any and all events within shirt walking distance. Watching lots of TV. It's not at all easy. There's a part of me that would love to get work done, but the mind won't consent to that. It wants to wait, too. So that's what we'll do.

Waiting is hard. Luckily, eventually, it ends. What lies beyond waiting can be truly transformative, joyous, life-changing... and, sure, sometimes it's disappointing too. But at the very least, the end of waiting produces one wonderful feeling: relief.

How Far We've Come

2010-04-12T10:36:00.000-07:00

I suspect I'm among the only people who has seen See No Evil, Hear No Evil. A shame.

Back in the glorious 1980's, Gene Wilder and Richard Pryor teamed up to make one buddy comedy after another. Most of them, including this one, were terribly written. The studios saw no need to put a lot of resources into writing and direction: they knew from Silver Streak that they had a winning combination of chemistry, timing, and racial harmony between the two comic geniuses. So, it seems as though they threw them into any wacky situation they could find, and slapped a title on it.

In this case, Wilder and Pryor took the emphasis off race and put it on disability: namely, deafness and blindness. You can imagine all the wacky antics that go with this. The plot of the movie fails to pull the antics together, nor to fill a single gaping hole in the story (of which there are many). But it does give us a young Kevin Spacey with a bad British accent, and the required beautiful female villain.

The two characters spend a lot of time shouting, "I'm deaf!" and "I'm blind!" Sometimes they interject a curse or two. And, while Pryor blind man is startlingly incompetent at mobility of any kind, Wilder's deaf man can read lips better than I can hear them. These are flaws, to be sure, but at the heart of each character there is... well, a heart. Each man has a passion, a sense of shame (or lack thereof), and a weakness. They are, in fact, fully developed characters, who happen to be missing one of the five senses.

In fact, while the story is about as thin as Kate Moss during Lent, the characters are three-dimensional. How nice. I'm not going to make one of those "better in the old days" arguments, mainly because there were plenty of one-dimensional characters in early film, but the 80's did present us with a lot of earnest, open characters. The current trend goes against that: irony does not lend itself to genuine feeling.

I still wouldn't give this movie more than a few stars, but it does hold a special place in my heart. It's one of those movies I saw over and over again when I was a kid, all within the first few years that my condition had popped up and was getting worse. I knew how unrealistic it was, even then, but it didn't matter. Watching it now -- I just saw it for the first time in more than ten years -- it still makes me laugh.

So I guess what I really need is a not-not-deaf buddy who can help me solve crimes.

Any Day Now

2010-04-06T05:52:00.000-07:00

It could happen tomorrow, this weekend, or three weeks from now. We have a cradle, a changing table, and a glider chair (like a rocking chair, but awesomer) ready to go. So I'm sure that when the baby does come along, we'll be completely prepared and won't be surprised by anything.

It's standard practice to pack a bag ahead of time, with everything we'll need at the hospital. There's even a classic I Love Lucy episode about it. It's probably not so common to include several lists in big, huge print so that, when it comes time to call family, friends, and a car service, I'll actually be able to read the numbers.

It's also not so standard to warn your doula that she might have to read small print for us. A doula, for the uninitiaed, is a kind of birthing coach who gives you some useful tips, shows up at your house when labor is underway, and helps the pregnant woman (and her hapless partner) get through labor and delivery. Like midwives, they are a severely under-appreciated and valuable resource, especially if you're trying to get through this process without medication and intervention. We happened to find one we really like.

Doulas don't have any one set of responsibilities -- it depends on the woman, the couple, the hospital/birthing center/home, and the doula herself -- but it's rare that they have to do a lot of on-the-spot reading. However, in our case, one of us will be going through contractions every few minutes, and the other will be legally blind. So it seems fair to warn her that she'll have that added responsibility. I don't think she'll mind.

It's an exciting time, no question. I'm curious about how much of the actual birth I'll be able to see, and what the whole thing will look like. I promise not to put up any birth pictures -- believe me, unless you're someone who enjoys seeking them out, you don't want to see them -- but I'll try to keep a few mental images handy.

The Blind Succeeding the Blind

2010-04-01T16:22:00.001-07:00

Our current, beleaguered governor is well known for being not-not-blind. But did you know that, were he to resign, his successor would also be one of us?

Richard Ravitch is best known for helping New York City out of its fiscal crisis in the 1970's and for cleaning up the state's transit system in the 80's. He also had a brief stint as the owner's rep during the scandalous Major League Baseball strike that canceled the 1994 World Series (which the Yankees surely would have won, by the way). Many also know him as a long-standing member of the state's business community, and he even ran for mayor back in 1988, when David Dinkins defeated him in the primary and went on to beat Rudy Giuliani, who later beat Dinkins... but let's stay on track, shall we?

Few New Yorkers are aware of the fact that Governor Paterson recently appointed Ravitch as the Lieutenant Governor of New York. (Paterson was himself the Lieutenant Governor; when he succeeded Spitzer, the position was left vacant.) This means that Ravitch would take over for Paterson. He wasn't elected, but then again, Paterson wasn't elected governor, and that's how the system works. Simple enough.

But even fewer New Yorkers are aware of the surprising link between Paterson and Ravitch: namely, their shared disability. Ravitch has suffered from adult-onset macular degeneration (the "old" version of my condition) since he turned 69, and his vision has been affected ever since. He was one of the lucky ones who got treated right away, but he no longer drives his own car, and he hires private aides to read the newspaper. Just like Paterson.

True, Ravitch spent most of his life as a fully sighted adult -- neither Paterson nor I can say that -- but it's still good to know that we'll still have representation in Albany. I was worried that there wouldn't be any blind people running things in the state government, and that the whole thing might become completely dysfunctional. Phew.

News of Ravitch's condition hasn't spread yet. It was reported today in the New York Herald Tribune, if you want to read more. (Sorry, can't find the link.) There's also speculation that Spitzer, Pataki, and the late Al Smith may have also couldn't see straight, but no evidence... yet.

No Subtitles on Boradway

2010-03-31T06:27:00.000-07:00

Since we're less than three weeks away from the due date, last night seemed like a great time to take a night out and go see a big Broadway show. We're both big Bernstein fans, so West Side Story seemed ideal.

I've been interested in seeing the current revival since I heard what they were doing with it. The show's original book writer (dialogue and story), Arthur Laurents, decided to go back and translate big chunks of the dialogue into Spanish. It makes sense: many of the characters are newly arrived Puerto Ricans who, for the most part, wouldn't speak English to each other.

What's more, the story of the musical is so well known and so simple that any audience should be able to follow it, in any language. Plus, Stephen Sondheim has spent most of his career regretting that he gave a young, uneducated girl the lyric, "I feel pretty and witty and gay." It sounds like something out of Cole Porter, not Hell's Kitchen.

So, heading into last night, I was really excited. It's not just the chance to see a show with great music and choreography: it's the chance to sit in an audience that would be at the same disadvantage that I have. There would be no subtitles or surtitles, like the ones at the opera where I first discovered that I couldn't read them. Here, the whole audience would have to listen and translate for themselves... except for the Spanish speakers, of course.

That's why I was a little disappointed to discover, a year after the show first opened, that they've decided to back-track on some of the Spanish. Now, they alternate verses with English and Spanish, so that the audience can hear the English first and understand what's happening. This was probably due to audiences complaining that they didn't understand what was going on. Even last night, with a good amount of linguistic hand-holding, a bunch of younger theatergoers complained that there was "so much Spanish, I didn't know what was going on." It's a little sad.

At the same time, it does validate my refusal to ever watch subtitled films. When people tell me that "you don't need to know what they're saying" in a Fellini film, I ask them to try watching one without subtitles and see if they still think that. Audiences crave dialogue they can understand; emotional expression isn't enough to get you through a story. SO, sure, since I know this show well enough, I didn't need the English; but for a kid who's never seen it before, it might be really frustrating.

I'd still highly recommend the production. It's some of the best dancing I've ever seen, and I can be a pretty harsh critic for a blind guy. I see just well enough to know how much energy, movement, precision, and coordination is happening. Sometimes, I use my little telescope/monocular to watch a couple at a time, and it was worth it here. Of course, the story is gripping, the characters are fun to root for/against, and the orchestra (spread across a pit and two house boxes) was freaking incredible. And, for the most part, the singing was pretty great. I wish they could do it without microphones, but we lost that battle years ago. Oh, and the set was fantastic.

Even if you can't quite see it all, a great musical gives you a lot to experience. The tiny visual details, and even the meaning of the words, are a tiny fraction of the experience.

Just Resign

2010-03-18T06:32:00.000-07:00

As someone who was enthusiastic about the prospect of a legally blind governor, it pains me to say it. But, really, there's no way around it now.

I believe the current count is five: that's the number of Paterson staffers who have already resigned. They include two top state police officials and his press secretary. The governor apparently has as much trouble keeping his administration intact as he does keeping friends in Albany... which is to say, he doesn't really seem capable of either.

Again, it's too bad. The fact remains that Governor Paterson is one of the only people in state government who's taking a realistic look at our budget woes. On policy, he's still very sharp. On everything else, he's a lousy executive. Either that, or the entire state apparatus has decided to frame him that way in order to distract us from the gigantic deficit that will probably lead us to the same fate as California by the end of 2012. But that just seems unlikely.

Here's the bottom line: while he stays in office, Paterson is a big shiny object that keeps the tabloids mesmerized but doesn't actually accomplish anything. If he resigns, we may finally be able to get back to the budget, for real. With the current state legislature, that seems like a bit of a pipe dream, but we're allowed to dream. This is New York, where the lights will inspire ya.

Anyway, what was I saying? Oh, right: resign. Please. Maybe the next partly blind politician will be better at the politics.

Complications (and, no, not that kind... hopefully)

2010-03-12T15:21:00.000-08:00

Ah, the perils of not being able to drive.

I've always touted the best advantage of living in New York City: not needing a car. At all. Even if you live in the outer boroughs, there's a good chance you can get by without ever having to step for into a personal automobile. Subways and buses take care of your every travel need.

In fact, it's often better not to have one. For example, say you happen to live through one of the snowiest winters in New York history, and your partner's car is conveniently parked on the street during each snowstorm. Well, hey: she doesn't have to get up to move the car for alternate-side-of-the-street parking, not the day after the blizzard: and that's great. (She's used to moving the car at least twice a week. Like most car-owning New Yorkers.)

No, but when you do want to get that car out of its parking spot, there's all this ice and snow that's blocking it in. The city plows have kindly offered to protect your car from... you. And being partially blind is not a good excuse for not digging out the car, especially when your partner happens to be "with child."

Still, if you do live in the boroughs, it's great to be able to jump in the car now and then and head to Ikea or, say, the independent pet shop on the other side of the park. Walking and subways won't quite take you everywhere, once you leave the island of Manhattan.

So, naturally, since we have a car, we should use it to get to the hospital's delivery room, when the big day comes. Right? Except, I can't do the driving. That's one problem. The other problem is that no one else around here -- none of our friends -- can drive. It's New York. Many have licenses, but few actually take them out, except to prove that they're old enough to drink. And you really shouldn't drink when you drive. Seriously. Don't.

So, we'll be calling a car service. We'll also be looking for a spot in a parking lot, where we can keep the car. 'Cause, after all, what if she goes into labor on a Monday night, and she's parked in a move-it-on-Tuesday-and-Friday-spot? I certainly can't move it. Family will want to be at the waiting room. Friends would drive the car into fire hydrants. The tetras are far too small, and fish are rarely granted licenses.

Very, very complicated. I don't know how drivers deal with all this. We should all be transported around by giant, floating jellyfish. And if you don't know what I'm talking about there, it's probably not worth explaining.

The Seven-Year Itch to Destroy

2010-03-07T09:48:00.000-08:00

It turns out that if you don't visit a doctor for seven years, that doctor is well within his rights to destroy all evidence of your existence... at least, when it comes to his own files. For those of you with long-term, slowly-progressing diseases, this is a handy thing for you to keep in mind. I kinda wish I had known it.

When I was first diagnosed, I went to visit some researchers doing state-of-the-art stuff in Boston. It was an international crew of rogue retina enthusiasts. They were entertaining and only made me want to puke a couple of times. They played with lasers and radioactive dye.

Within five years, that practice had dissolved. I still went for follow-up visits, heading up to Boston every four or five years to see the guy who had been in charge. This, quirky, larger-than-life gentleman tried to speak as quickly as he thought, but it was usually a losing battle. He spoke many words to me but rarely, if ever, told me anything super-useful.

At the end of each visit, he would casually suggest that I come back in four or five years. If I felt like it. He didn't imply that it was all that important. From the usefulness o each visit, and the travel costs of getting to and from Boston, I didn't really disagree.

My last visit there was in the summer of 2002. And then, in February, I got the news about my change in prognosis. I asked the current experts if the old tests results might be helpful to them, and they were interested in seeing them.

Now, we get back to that seven-year issue. I tracked down that retina doctor, the one who had been so casual about my ever coming back. His office, it seems, has dutifully destroyed everything that had my name on it. They must have done so promptly at the seven-year mark. I called twice, and even brought up the fact that I had sent him a letter, at his office, in mid-2003. Nothing.

I called my current, regular ophthalmologist, hoping they had sent him my records back in the day. They sent him a letter. No hard data, no images: just a letter.

It's amazing to me that someone would engage in a field that involves long-term study, watching cases over years and decades, and still would have no clue about the importance o archives. Sure, the law allows you to get rid of your files after a while... but the law also allows banks to foreclose on people who have filed for medical bankruptcy. It allows men to walk out on their families and do nothing but pay child support. It doesn't make either one the right thing to do.

So much for my latest contribution to science. On the bright side, I now have a reason to hold on to all my bank statements from 1998. Someone might need them for science.

A New View of My Future Vision

2010-03-01T11:12:00.000-08:00

Back when I saw the experts in September, they wanted to do just one more thing: take my picture. Really, they wanted a picture of my eyes, but same difference. It shouldn't have taken very long, but since I had been there for more than seven hours ,they really didn't want to keep me, and suggested that I just come back another time.

Well, I never really got around to calling them. With my condition not being very severe, I couldn't really tell if I was any use to them, and it's a decent commute. More to the point, they were so disorganized and inefficient about everything that I wasn't eager to go back.

So, needless to say, I was a little surprised to get a call from one of the research doctors. He asked if I could come back and go through a few more tests. And, yes, they would also take my picture.

The day I went back happened to be one of the big snow days, and they were a little surprised to see me.

"I don't live that far from the subway," I explained.

They looked at me blankly. I think they had forgotten that, while most of their patients come from all over the world, I come from Brooklyn.

The doctor assured me that they would be much more efficient this time. Apparently, I had been one of the first patients to visit this particular group, and they were still figuring out their process. That's what they told me, anyway. My impression was that the doctor himself had taken over a lot of the testing, just because he didn't really trust other people to do it.

True to the doctor's word, things went very smoothly, and after a lot of sitting in dim rooms, followed by trying not to blink with bright lights being shone in my face, I sat back and blinked. A lot.

The doctor looked at his screen and said, "Yes, this looks like classic Stargardt's."

I nodded. I've heard that before; no one has ever questioned my diagnosis, not since it came twenty years ago.

"Just out of curiosity," I said, "on the range of mild to severe among Stargardt's people, where do you think I fall?"

I had asked this question the last time, but he hadn't had a chance to answer it. This time, he did.

"Actually," he started, "I think you fall into the more severe category."

I'm not sure how I reacted in the moment. Experts in facial expressions and lying say that you give tiny little twitches to indicate how you feel about something, most of the time that you don't even realize yourself. I don't recall being shocked. I really should have been. But, then again, that's what "being in shock" means:: not really feeling anything at first.

The doctor explained that there are three general categories of my disease:
1. (mild) Only the very center of the vision is ever affected.
2. (moderate) The center and the rods (little bits that deal with light and darkness) are affected.
3. (severe) The center is affected, and much of the surrounding rods and cones eventually go as well.

I had always gotten the impression that I was in category 1, or possibly category 2. He felt that I was "somewhere between 2 and 3." Since Stargardt's patients generally don't change from one group to the other, this meant that I was in group 3. A few days later, he checked with the resident super-expert, who confirmed that I was indeed in that most severe category.

Group 3 is a pretty bad prognosis. The ultimate result, over time, is that I would no longer be independent: I'd need a guide dog. Now, I've always wanted a dog, but there's a difference between wanting one and needing one, and I'd rather not need one. I'd also rather be able to, um, see stuff.

After about half an hour of sitting in the dark (necessary for one of the tests), I ate the lunch I had brought (seemed like a good idea, after last time) and ate what felt a bit like comfort food. The doctor came in and let me know that we would have to wait a little while longer for the test, since there was a line.

"While you're here," I started, "what kind of progress should I expect? I mean, if I'm supposed to go functionally blind in forty years, what about the next ten or twenty?"

First, he assured me that I would not go completely blind, that I would still be able to perceive light and dark and some color. This was not all that reassuring; I'd like to have better vision than my future guide dog, if possible. But he also said that while he couldn't say what would happen in ten or twenty years, he could say that the disease tends to move slowly, and that my vision probably would not seem too different twenty years from now.

Now, in research terms, twenty years really is a long time. Unlike the empty assurances twenty years ago, when I was first diagnosed, there are some real possibilities for cures now. Actual studies are underway in gene therapy (which would halt the progress of the disease) and stem cell treatment (which might even reverse it). At the point that I'm at now, no one would want to experiment on my eyes because of the risk of actual blindness, but I would probably be a candidate down the road.

So, really, this hasn't changed my life too much. I had always expected the vision to get worse in old age, but I understood that to mean that I'd need magnification glasses. This will definitely be a bigger deal than that. But, hey, I've never been one to take the easy path.

How to Give Birth, for Women and Men

2010-02-27T06:25:00.000-08:00

I have generally avoided, if not shunned, the following phrase:

"We are pregnant!"

Pregnancy, as far as I am concerned, is an anatomical fact. Although there is now one documented case of a man being pregnant (no joke), there are no instances, to my knowledge, of two people being pregnant with the same child. If I ever did hear of such a thing, I would say, "Mazel tov!" and then proceed to get my brain thoroughly rinsed in hot water. As far as I am concerned, my partner is pregnant, and we are expecting.

Nonetheless, I am fully committed to being fully involved in every step of the pregnancy, and that means -- yes, Bill Cosby fans -- taking classes in Natural Child Birth.

The process is not exactly what sitcoms would lead you to think. Wisdom has shifted since the Cosby days, and no one tells you to breathe super-fast anymore. Nowadays, we call that. "hyperventilating." There are breathing exercises, but those are mostly to help the woman relax during labor. One of the midwives who teaches the class (yes, they're called midwives - I have nothing but good things to say about midwives) has a lot of great practical suggestions of what to do before and during labor, not to mention helping out with the whoel pregnancy discomfort thing. There's also some handy anatomical lecturing. Good thing, too: I was only good enough at biology to cram for the tests.

These classes also include some fuzzier stuff. "Stress can be harmful to the baby, so make sure you're living as stress-free as possible." In New York City? Good luck. "Your mood makes a big difference. Make sure you're in a good mood." So if I'm in a bad mood, I'm harming my baby? Shame on me! "Fix whatever you need to fix in your life, before the baby comes." Right, we'll get right on that.

The fact is, my partner and I are generally happy, well-adjusted people, so none of this really affects us... but if we weren't, I wonder how much of this advice would actually help. Telling people to feel better tends to only make them feel worse. That's why I never send Get Well cards: I always send cards that say, "You're sick! Sucks to be you. I feel great!" I'm a nice guy.

On the way back from the last class, my partner expressed her annoyance at the teacher. Why, I asked? She wondered why, despite that I had said early on that I couldn't see well, the teacher continually wrote and drew on an easel all the way across the room, where I could see nothing. This was true. The odd part was that I hadn't really thought about it.

If there's one thing I've picked up about being a not-not-blind father-to-be, it's that the second part trumps the first. I've been spending a lot less time thinking about my vision and how others perceive it, over the last several months. I spend a lot more time thinking about how my baby girl is going to see the world. ((Genetically speaking, she should be seeing through normal eyes for her entire life... I hope that's so.) My own vision has become delightfully secondary, for the moment.

Still, the vision does come up once in a while. And, now that I've been back to the experts, I have a lot more to talk about. But that's a story for another day.

Oh, Well

2010-02-25T13:44:00.000-08:00

Poor Governor Paterson. I say that, not because he seems to be the victim of anything (other than the obvious bad timing), but rather because this job clearly isn't agreeing with him.

Of course, the Governor isn't very good at convincing anyone to do anything, and he may well be as incompetent at governing as everyone seems to be implying. But still, with every single political figure in New York basically cutting bait on him, you have to feel a little bad for the guy. Even his political enemies, in moments of candor, have to admit that he wouldn't cut school funding out of glee. The whole state's in trouble, and the political machine has found a very convenient fall guy. I'll pity the next governor too.

In the meantime, I wonder if the governor's shaky reign has had any effect on life for us blindish folks at large. It might be my imagination, but I've noticed less ignorance about the visually impaired. Fewer store clerks give me funny looks. I also haven't gone on any job interviews lately, so it's probably just a coincidence... but, hey, wouldn't it be nice to think that we got something out of an otherwise weak governorship?

Call me a victim of identity politics, but I still feel the urge to defend the guy once in a while. And say what you will about him, but he still can rattle off policy better than any New York politician with 20/20.

20 Channels and Nothing On

2009-12-17T07:49:00.000-08:00

My mom was wondering why we had bought a big, flat-panel TV if we were only going to get basic broadcast channels.

"We don't watch that much TV," I automatically responded.

"Then why the huge TV? Why spend all that money for something you don't watch?"

Well, for one thing, it wasn't that much money. It was the store generic brand, which lacks a lot of the bells and whistles -- OK, all of them -- but it does work.

The larger point, of course, is the larger screen. I'd rather not spend every TV-watching second with my nose twelve inches from a display. I do like watching movies, and the TV I do watch, I'd like to be able to actually see. From a couch. A second-hand futon, in fact. I don't think that's ridiculous, absurd, or extravagant, even if we only have about fifteen legitimate, English-speaking channels.

That said, broadcast channels have a lot of dead time. And by dead time, I mean they fill a lot of their programming with stuff that will melt your brain. If I have to watch one more celebrity gossip show, I will have to serve up my noggin as a chopped liver substitute. Not the best of situations.

So, I made a deal with the cable company to get a few months of cheap "family" service, which includes Comedy Central and the Food Network. That's all we really need. I would pay for just those two channels if I could.

I still can't catch every visual gag on the Daily Show. No matter: I get to see most of it and hear it loud and clear until March, and that should keep me warm through a long, cold winter.

Can I Save the Life of a Child?

2009-12-11T10:52:00.001-08:00

Yesterday, I set out to prove that even the visually impaired can learn CPR.

OK, really, I just thought I should do it for myself... no big points to make. But I was curious how it would go.

In preparation for becoming a dad, I decided to sign up for an infant/child CPR class. I had a couple of phone conversations with Red Cross people to let them know that they were getting a partly blind student, and unlike the folks at the tutoring agency, they did not act as though I was from another planet. One of them even told me that had had legally blind students before. Score.

Sure enough, when we went around and introduced ourselves (all five of us), no one blinked when I said I was partially blind. They did applaud when I said I would be a father in April. Oddly enough, the same people got into a discussion later where they (rightly) said that you need to take a test for everything in life, except becoming a parent. I don't know what accomplishment they were applauding... fertility? But it was nice to get some smiles.

The training itself was easy and surprisingly fun. As promised, the instructor read every relevant part of the booklet aloud -- that just seemed standard -- and trusted me to ask questions when I needed to. As it turns out, there's no aspect of CPR that I can't see: as long as you can tell if a chest is rising with breath, everything else involves the other senses. The whole process is pretty tactile, which is great for me. Plus, with such a small class, she was able to come over and correct me when I had something completely wrong... which she did just as much for the other students. It's good to feel normal now and then.

At the end, she was about to leave us to take our written, multiple-choice tests when I asked if I could take mine orally. I think she had just forgotten, and after a little jockeying around outside, someone arrived to very clearly and patiently read each question and the possible answers, and he even filled out the answer sheet for me.

It took the instructor about ten seconds to grade the exam. Now, I was always a straight-A student, so this was a matter of pride for me. She handed me my card, which mean I had gotten at least 80%... but that's a B-. I had to know.

"So how did I do?" I implored.

"You got one hundred percent."

Wow. I mean, sure, the answers were pretty obvious, and most of the time the answer was D (all/none of the above), but still... a 100% score is a rare thing.

I proudly signed and took my American Red Cross card, stating that I was certified to perform infant and child CPR and to use an AED machine. It was 2:43, and I hadn't eaten a thing since 9:00 in the morning... so I took my card to the closest place where I could both eat AND possibly put my life-saving training to the test:

McDonald's.

Remember Tests?

2009-12-07T16:27:00.000-08:00

I went in for a tutoring job today. If you've ever randomly looked through job listings in New York, you've heard of this company: they're constantly hiring. They interview in groups, eight at a time, and they seem to run through candidates the way Homer Simpson downs donuts.

When I signed up for my group interview slot online, they sent me an email with the invitation to ask questions. This, I now realize, would have been an ideal time to forewarn them about my vision. I didn't.

I also failed to mention the blind thing when we went around the room, introducing ourselves and explaining why we were there. I have to interject, on this moment, that everyone (including myself) lied a little. This always happens in interviews, but rarely do you get a chance to hear eight people do it in a row. Everyone claimed an altruistic motive for wanting to work there, and while the job doesn't pay well, it does pay -- and in this economy, that's the main reason for anyone wanting to apply. OK, done; moving on.

After everyone told their tales, the staff member asked us to fill out a short survey. Oe page, pretty simple. Small type. She left the room just as I was taking out my monocular to try and fill it out quickly, but when she came back, I was the only one who wasn't done. I'm used to that from college and such, but it's been a while.

Next, she informed us that we could now turn over the stapled packet in front of us... which was a test. Reading. Math. Science. Tiny, tiny print.

"Start with the section you feel strongest at, so that you don't waste time needlessly," she instructed us. "You have until the clock reaches the three."

As I briefly contemplated the fact that I haven't taken a strictly-timed test since I was... well, really, I can't remember when that was, since my teachers gave me extra time since the fifth grade. So as I realized that, the staffer asked for my survey.

"Sure," I responded as I passed my quarter-finished survey, "but I think we're going to have a problem." I explained that I was partially blind, and I asked if I could possibly have some extra time.

She reacted as though I had just asked for the answers on the test -- not as though I was being malicious, but rather, that I had just asked her something completely unorthodox and unheard of. After a little stumbling and stuttering, she said that she would be outside if I needed her.

I spent about three minutes trying to read a single math problem before I picked up the test and walked outside. I spoke with the staffer for a little while, and then she turned to her boss, sitting right nearby, who offered to have a large-print version printed up the next time I came in. They were nice about it, and I apologized for not giving them the heads-up... because, hey, I didn't.

All told, they handled it pretty well, considering they clearly had never run into this issue before. That, in and of itself, does surprise me. Are there really no other partially blind people in New York who want to tutor? Have these folks never, over the course of college or high school or other jobs, encountered someone who couldn't read small print? Are there really that few of us? Or, do we (as a group) willfully avoid situations where someone might have to accomodate us? In retrospect, I've done that last one a lot.

I'll probably go back in for a more prepared interview (in that they'd be prepared for me), and we'll see whether they and I like each other enough to keep going with the process. In the meantime, I'm going to continue to recover from wisdom tooth surgery, which doesn't really care how blind I am. Ah, pain.

Why I've Been Slacking Off

2009-11-30T13:41:00.000-08:00

If you're reading this, you either already know me or like to check up on painfully dormant blogs. In the first case, you probably know this; if not, um... surprise!

This April, I will find out, firsthand, what it's like to be a not-not-blind father.

In keeping with my tradition of not talking about my romantic life on the blog, I'll just take a moment to say that my partner in crime is going to be, to use a technical term, an awesome mom. No one worries about her ability to raise a kid. Frankly, no one worries about my abilities in that department, either. No one has even brought up the idea that being sort-of-blind might make it harder to be a parent.

There are plenty of challenges, of course. Maybe people don't mention them out of politeness, or out of fear that they might offend me. Well, I'm not afraid, and it seems well worth it to list a few potential problems I may run into:

-reading to the child at night
-teaching good eye contact without actually being able to do it myself
-communicating with a pre-verbal baby
-keeping my child safe
-and many others...

On the safety front, I'm doing what I can. I just booked an infant/child CPR class at the Red Cross, in the hopes that I'll never need to use the training. There was one line about disability on the website, basically saying that you need to contact them ahead of time, so I did. The person I spoke to told me that she would give my information to the instructors, and they would call me if they had any questions.

"Ask them to call me no matter what," I said. "There are all different kinds of blind, and there are some things I can do, and some things I'll need help with."

She was fine with that. We'll see if they actually call.

Anyway, that's the big news... As blind-related events come up, I'll actually make an effort to post them.

Oh, and about that visit to the experts: sorry. Really, Part 3 wasn't that interesting. The upshot is that, after spending six hours there, I still have to go back at some point. They need to take photos of my eyes. They say it won't take long. I haven't scheduled the appointment yet. I feel like I have better things to do.

The Search for Spot, Part 2

2009-10-21T19:25:00.000-07:00

First of all, sorry to have been gone these long three weeks. I have been moving and settling into a new apartment and, in some ways, a new (awesome) life. More on that soon.

Also, welcome to my fellow Stargardt's victim, who commented on the last entry - and thanks for the referral to my fellow blind-ish blogger, Rich, at The Perfect Focus.

OK... on to the next part of my visit to the experts.

Part 2: Bright Lights

When I first started working on theater projects, I probably had the idea at some point that I would be in the spotlight... that everyone's eyes would be on me. Is it so far off to have a whole bunch of bright lights flashing on my eyes?

Yes, as anyone with a vision impairment knows, ophthalmologists love to do things that make you want to blink, but they require that you don't blink. And I fully expected that to be the case at the experts.

The first thing they asked me to do, they explained, was not required for the study but would be helpful to them. It would take about two hours.

"Sure," I said, "why not?" I mean, I was hoping to catch a train to Philadelphia at some point that night, but ti didn't really matter when.

This was the point at which they started to put wires around my face.

First, they wiped my ears with an alcoholic solution, then attached clips. Then, they wiped my forehead with a solution and tried several times to stick something to it. When it didn't hold, they used tape. (I had a zit for about a week after that, and I'm pretty sure it was from a researcher's thumb.) The wires came next.

With a wire running straight across my bottom eyelids, I asked them if it was all right that I was very uncomfortable.

"Well, we could have used an anesthetic, but that would only last a few minutes, and then you'd blink more."

Fine. The discomfort was fading anyway.

"OK," the researcher said," now I have to leave you in the dark for 45 minutes." This was so that my eyes could acclimate. "Do you have a favorite radio station?"

"No iPod?" I begged.

"No, they give off too much light."

Reasonable enough. "OK, put on 93.9 FM."

That's WNYC, the local NPR station. As she flipped through the dial, I recognized it immediately.. It was my least favorite show - the special guest was a "cactus cabaret" singer from France - but it was mostly music that didn't offend me. All good.

So, for the next fifteen minutes or so, I sat still listening to French cactus cabaret in the dark. At one point, the researcher came back in with a red-light flashlight.

"I forgot to dilate your eyes," she unapologetically stated. "It's harder int eh dark." And, sure enough, she missed the second eye-drop and had to try again.

I still had another twenty-five minutes in the dark, during which the radio program ended.

The new one was RadioLab, one of my favorites. Hooray!

This episode was about parasites. Boo.

Worse yet, it started with a blow-by-blow description of Ridley Scott's Alien, one of the scariest films of all time. And I got to hear it recounted to me in the dark, complete with audio of the creepiest scenes. Lucky me.

By the time the researchers came back, I was basically numb to humanity. Which was a good thing, because that's when they turned on the machine and started flashing thousands of blinking bright lights at me, all the while instructing me to try not to blink.

The blinking bright lights went on for a while. I don't know how long. I had lost all sense of time.

"OK," said the researcher," good job."

Whew. It was over.

"Now I need you to just sit with your eyes facing this light for the next half-hour. To acclimate."

Right... well, in this case, at least I didn't have to sit all that still to keep my chin on a chin-rest.

"Ready?"

I faced the light.

"See you in half-an-hour."

"Um..." I started. But it was too late. She had turned off the radio, and I was left to face a bright light, in silence, for the next thirty minutes. That's when I started singing to myself.

And that's where we'll leave it until next time.

The Search for Spot, Part 1

2009-09-29T06:31:00.000-07:00

Thanks to a few lucky coincidences, I have stumbled upon a team of Stargardt's Disease experts. What's more, they're looking for research study participants. As long as they don't further blind me, I'm happy to oblige.

It took a little while to set up an appointment, but we made one for last Friday. I would try to describe the entire visit on one post, but you probably have better things to do with your life, like taking out the garbage or learning to tap-dance. So, I'm splitting this up hour by hour.

Part 1: Paperwork

On Thursday night, I had been having dinner with a friend when I mused, "Gee, wouldn't it be funny if they gave me a clipboard and asked me to fill out a form with tiny print?"

"Oh, that's ridiculous," she said. "At an eye doctor? If they knew you were sort of blind?"

"It happens everywhere I go," I replied, "but there's always a receptionist who, when I tell her I'm legally blind, helps me to fill it out. I dictate, and they write. But I'll bet you somebody does hand me a clipboard."

So, naturally, that's what I expected at the experts.

The next day, I arrived at the doctor's office exactly on time, at 12:30, gave my name and sat down. Not long after I arrived, one of the researchers came in, and the receptionists pointed to me and said, "he's here." It turns out, "he" wasn't me; they had been expecting a patient since 10 in the morning. But we quickly established who I was.

After several questions, four annoying eye drops, and a few simple eye tests, the researcher had every reason to think that (1) I have Stargardt's, (2) I can barely see the "E" on an eye chart, and (3) my prescription sunglasses don't make that much of a difference. It was at this point that someone informed her that the 10:00 patient had finally arrived, only three hours late, and we went back into the waiting room.

"OK, let's get you registered," she said in passing as she went to the desk.

"Ah," I thought, as I saw her grab a clipboard. "Brilliant. She's going to sit with me and let me dictate as she fills out whatever paperwork there is. Thank goodness, I'm in a place where people know exactly what my problem is."

She handed me the clipboard.

"So, can you fill this out?"

I sat there for what felt like an eternity but probably lasted a mere three seconds of shocked silence. I started: "Um..."

"It's three pages," she explained. "You only need to fill out the top part of the first page. For the next two pages, you have to circle yes or no for each of the [single-spaced, more than fifty] questions. Don't leave anything blank; you have to circle no if the answer is no."

My reply: "Um..."

"So, can you do it?"

"I..."

This is normally where I would explain that I'm legally blind. She had just conducted a test that told her that. She had just asked fifteen questions that made it abundantly clear how poor my vision was. Now, I do have my little monocular, which allows me to do some spot-reading of small text -- I've used it to fill out forms before -- but it had literally been years. Maybe she forgot? Maybe she has really, really bad short-term memory?

"Um," I tried again, "I could, maybe... Are you going to be doing anything for the next forty-five minutes? Because it would take about that long."

"Yes," she replied. Which was true. There was that patient who had arrived three hours late. Unlike me, who had arrived exactly on time.

"OK, I guess I can try it," I sheepishly sulked.

"Great, I'll check back in with you later." And off she went.

I think it may have only taken me 35 minutes to complete the 2.5 pages. Filling out a form with a monocular is a lot like riding a bike: you never forget how to do it, and it involves incredible frustration, bad posture, and eye strain. (It's been a while since I rode a bike, so I'm not sure that last part applies.)

She came back over just as I had finished, and she asked how I was doing.

"Actually, I'm done," I proudly reported.

"Good," she approved. "Here's more."

I filled out the second set of questions and signed one of the forms, but decided to leave the second one blank. I didn't feel like spot-reading five single-spaced pages about a research study, and I really didn't feel like signing my consent to something I hadn't read. I let her read it to me later.

That was the first 90 minutes or so. The guinea pig part came next.

All Museums Are the Same

2009-09-24T19:19:00.001-07:00

...at least, it would seem that way if I didn't have friends to read the labels.

I spent a decent chunk of my childhood visiting the American Museum of Natural History, and I went back with my girlfriend yesterday, for the first time in almost ten years. One difference I noticed was that many of the labels are now printed on plastic, using easy-to-replace cards. Back in the day, the dinosaur names were set in stone. Literally. Which, in retrospect, made it difficult to update to the latest scientific information.

Even as a kid, when my vision was much better, I never really read the labels. I could just have easily been going to an art museum. The dioramas were my favorite part -- I went back to see them, and was relieved to find out that they were still intact -- but I still can't tell you exactly what they represent. They just look cool.

True, a museum staff goes to great lengths to arrange its exhibits in a form of narrative, so that you get the story of the species or artist without having to read a word. But, really, without those descriptions, the story usually isn't too important. Museums, to someone like myself, are about seeing cool stuff and wondering how they made it.

I will say, those stone labels were really big and easy to read. Maybe it's because fewer people had glasses back then?

More on Color

2009-09-20T08:41:00.000-07:00

You might say that I'm not not colorblind. I wouldn't, but you might.

Yesterday, I mistook a co-worker's dark purple shirt for black. This doesn't happen too often, but it's just common enough to make me think that, while I'm definitely not colorblind, I do seem to be color-slow.

Early on, when my condition was being diagnosed, one of the tests they gave me was a color ordering test. Basically, I had to put a set of colored pegs in rainbow order. I had some time to complete it, and I probably leaned in pretty close to see the pegs, but I did put them in all but perfect order. The one mistake I made, according to the doctor, was one that any perfectly-sighted person might make as well.

Still, when asked to make a quick judgment about color, I make mistakes from time to time. Why?

Well, for one thing, when your brain is used to making stuff up (as mine is, to fill the gaps that the eye can't actually see), it can sometimes go a bit overboard. I've learned not to fully trust my eyes most of the time, especially when there's some kind of a life risk involved, like crossing a busy street. So, naturally, my brain will sometimes assign a color to a shirt that isn't actually there. It usually isn't too far off within the color spectrum, but sighted people get confused anyway.

The other issue is one a friend pointed out many years ago, having to do with peripheral vision. It turns out that in the periphery, the outer corners of your field of vision, everything is in black and white. The center of the vision is meant more for colors and details, and the periphery is meant for tracking movement. You know, kind of like when we were back in the forests, waiting for bears to attack. Not that we're not worried about that now... but I do live in New York City, so the risk is a bit lower.

Anyway, until your brain assigns a color to an object, your peripheral vision won't know what color it is, so the brain makes a guess. I use my periphery more than most people, so naturally, my brain guesses about color more than most. Thus, purple shirts off to the side of me look black.

I'm happy to say that the purple-shirt-wearing colleague was not offended. No one takes offense at being accused of wearing black. Some people might get offended at the reverse, but we can deal with homophobia in a future post... if we really have to.

Monkey See, Monkey See Color

2009-09-18T08:07:00.000-07:00

Apparently, male monkeys are red-green colorblind. In this sense (and this alone), I do not resemble a monkey.

In recent research, scientists seem to have found a cure for colorblindness in monkeys. The method is gene therapy, which has often been floated as a possible cure for my condition. After about five months of gene therapy treatment, male monkeys were able to see the difference between red and green.

The adorable story is on NPR:

http://www.npr.org/templates/story/story.php?storyId=112897277&sc=emaf

The scientists in this story ask the same question that I have often asked of myself: namely, if you were to cure the physical eye, would the brain synapses still exist to process the image? In the case of the monkeys, the answer was a resounding "yes," despite the nay-sayers. I wonder if the same would happen for me.

Well, for the moment, this research is still monkey business. But, hey, in another five years... you never know.

Guest Post #1: Oouch

2009-09-12T17:54:00.000-07:00

I got an email from my friend Andrew, who has the same vision impairment that I do, and we both thought it was worth sharing with everybody else. And as I took the short amount of time to post this, I found myself twisting and cracking my neck. Funny how life imitates descriptive prose.

Anyway, here it is:

I had the notion to peruse your blog this morning in search of confirmation that other not-so-sighted people might share my pain in a particular area.  Notably, my neck.   It is my suspicion that, unlike totally blind or fully-sighted people ("Sighty", as they are refereed to in my family), those harboring visual impairments also carry proportionately more stress between their shoulders.  Craning my neck has been an occupational hazard that seems to slowly be taking a greater toll each time I bend over to read something with my magnifier or arc my chin toward the computer screen.  The encumbrance of being legally blind is well-documented as far as the difficulties limited reading ability brings, but rarely is the physical stress of day-to-day low-vision operation acknowledged.

As a playwright, you might face the same thing.  Even with easily adjustable screen enlargement applications, I find myself hunching toward the computer much of the time instead of increasing the magnification.  It's natural, especially for those of us who grew up with more vision than we have now: when you can't quite see/read something, you get closer to it.  You lean.  You squint.  With books and magazines (in the rare instance I attempt to interact with them such plane takeoffs, barbershops) I've gotten better at lifting them vertically to my face rather than lower my back to the flat surface they're on.  But still, I'm choosing between extended elbow pain and the shadow of my head for the former or an awkward position and added pressure on my poor neck for the latter.

All of which is to say: ouch.  Anyone else?

Back to wrestling with my instincts to lean toward the computer...

Don't let Sight get you down,

AB

Thanks, Andrew! Much obliged.

Not Not Blind Returns!

2009-09-09T10:39:00.000-07:00

We're back! Welcome back to you, and I hope your summer was superb. Mine changed my entire freaking life... but we'll get to that in a future post. For now, here's a preview of what you can expect to read in the next few months:

Teaching Anecdotes

Camp was full of fun eye-sight-related stories. Plus, I will be working in a lot of different kinds of schools this year, and I expect that every group of kids will react differently to my "when I'm not looking at you, I'm looking at you" bit.

Medical Research

I'm planning to participate in real-life, actual research on my condition. As they do stuff to me, and as I learn new stuff, it will magically get posted right here.

Guest Entries

My old friend Andrew has already contributed a great insight into the experience of being partially blind -- watch for it in the next week or so -- and I hope it's the first of many. Others are welcome to contribute as well.

???????????????

There's a whole other category. It's a big, big deal. I don't want to give it away yet. Soon. I promise.

Dumb Observations (and Non-Observations)

You know... the stuff I normally post.

That's the table of contents. Chapters to follow, not in that order. Glad to be back.

Just Passing Through

2009-06-17T19:53:00.000-07:00

I've spent most of the last two months teaching, preparing for an upcoming move, getting ready for my summer job, and writing plays. It's been pretty great, all told, and I have not come up with too many unique (or even dumb) thoughts about being not-not-blind. However, I'm about to spend two intense months working with artists, both kids and adults, and more stuff is bound to make me think. So, come the fall, I expect to post new and interesting ideas that will make you stand up and cheer for America... or,, at least, not bore you to tears.

Until then, have a great summer, and please think of your less-than-perfectly-sighted friends. I don't know why. I just think it's important.

Call Me GPS

2009-05-23T09:24:00.000-07:00

The plan, today, is to go upstate. I will not be driving, of course. But just in case the driver needs help with navigation, I intend to be ready.

"But how?" you ask. "You can't read the highway signs."

Excellent point. I can't. However, I did print out directions on MapQuest and translate them, using my own personal code, into large brown-magic-marker abbreviations on the back of the sheet.

So, as long as I can remember what road we're on, I'll know which one we're supposed to be looking for. At least, that's the plan.

As for the ability to identify nearby rest stops and gas stations, we will be at the mercy of the highway commission.

Would That I Were Blinder

2009-05-12T19:51:00.000-07:00

There are some things I would rather not see.

I would rather not watch Elizabeth Edwards turn her competent, intelligent, articulate image into that of a wronged soap heroine. Among all the candidates' spouses (and the candidates, for that matter), she was best able to articulate policy goals during the campaign. Now, all anybody asks her about is her set of proverbial horns.

I would rather not watch any more instances of the SNL Paterson parody. I do laugh at it now and then, but now I walk away less offended than saddened.

As an old friend of Judd Apatow once openly worried, I really do think that comedy of the bully is making a comeback. Woody Allen and others had once been the champions of the bullied, but those voices are getting diminished now, and we're left to make fun of the half-blind black man whose worst sin, as far as I can tell, was to bungle the publicity about a political appointment. Sure, Paterson has a terrible approval rating, but no one seems to have a good reason for it. He did make the mistake of chiding SNL for being a bully, though. So there you go: never call a bully a bully.

One last thing I would rather not see: Dick Cheney's face. Ever again. Do they make blind spots just for that?

Keeping the Public Informed

2009-05-03T19:14:00.000-07:00

Tonight, I "revealed" twice in the span of a couple of hours. One mention at a meeting for an upcoming teaching project, the other after a show I had just seen. Both went fine.

The first one went something like this:

"By the way, I know that some of you aren't aware, so you should know that I'm slightly blind. The only way that should impact you is that if you hand me a written note and expect me to read it, I won't be able to do that. But if you want me to pretend I can read it and make it up as I go along, I'm pretty good at that."

The key seems to be getting the other person to laugh. This has always been Governor Paterson's approach to setting people at ease, and it's something I learned by trial and error over the first ten years of being not-not-blind. It does work, in that it gets the information across while simultaneously conveying that I am not a total weirdo.

Humor is a warm connection that does not require eye contact. But there's also a part of a reveal that, subtly, makes people feel more distant. There's a reading that does, "Oh, you're mysteriously blind? That's different from me. You're not quite like me." Not to say that people consciously think this, but I do feel that there's an element of that, even in social surroundings.

Whatever the case, it's necessary, and it does feel good to get a laugh from a room. I've known the latter since I was nine years old, and it's taken me a while to figure out the former.

Not Colorblind

2009-05-01T07:06:00.000-07:00

I'm no botanist, but I'm pretty sure the "cherry blossoms" that spring up this time of year have nothing to do with cherries. I have yet to see actual cherries growing on trees in New York City. I may be missing them ,of course.

It is pretty damn cool to see the trees change from skinny brown to bright cherry-red to lean green over the course of two weeks. The way I see them, it's not so much that I'm looking at individual leaves -- that's hard -- but instead, especially in the breeze, one big moving organism.

I do like trees. And, to quote Lex Luthor, so does your average Cocker Spaniel. I also like Cocker Spaniels.

Branding

2009-04-24T15:45:00.000-07:00

I have never been a fashion-conscious person. In high school, I found it downright mysterious that anyone would pay attention to a commercial label on a pair of pants or a shirt.

It was pretty easy for me to dismiss this as adolescent shallowness at the time, but then I got to college. Everyone (except me) seemed to be aware of who wore J. Crew and who wore Gap. I mentioned this to a friend of mine, who I thought of and still think of as an intelligent, substance-oriented person, and he responded that while some labels mean nothing about the people who wear them, others do.

"If I see someone wearing Tommy Hilfiger, it means they want to come off as a certain type of person," he explained.

What type of person?

"You know, the type who wears Tommy Hilfiger."

Right.

What he was expressing was neither stupid nor shallow. Even mass-market fashion serves as a form of expression, broad and unspecific as it might be, and it's a language people use to communicate before ever speaking a word to each other. If you heard last weekend's This This American Life, you know about a great example that involved acid-wash jeans. Of course, that turned out to be a communication that neither party understood, but that's life.

Even people who don't specifically look at the label -- and, again, I am physically incapable of doing so without putting my nose up to some one's sleeve -- still take a message from the style and cut of the clothing. Had someone trained me, or had I trained myself to do this when I was a kid, I probably wouldn't be at too much of a disadvantage now.

At the same time, I'm a little proud to be out of the fashion game. Well, not entirely -- I do put a little thought into what I wear -- but cheap and comfortable are ideal for me, and no one seems to complain. I may be contributing to slave labor by buying cheap, but that's an entirely different issue.

Full disclosure: I do own two paris of Tommy Hilfiger bedsheets. They were given to me. I happen to like them because they're comfortable. If this communicates anything about me, I do not need to know it.

Boring is Good

2009-04-20T12:26:00.000-07:00

I went in for my annual eye check-up today, and my eye doctor chastised me for being boring.

"You're not giving me much to do here," he scolded.

My eyes haven't changed since last year, the year before, or the year before that. Even my light prescription is still the same -- and I only wear glasses in movie theaters.

Back when I was twelve, a specialist in Boston told me that my vision would not change for most of my life. In other words, I can expect not to expect anything new.

Medical science gets headlines when they discover cures or new diseases, but rarely for the ability to predict that nothing will happen. I, for one, am glad to make no headlines today.

Whoops

2009-04-14T17:18:00.000-07:00

Last night was great. Staged reading of my ten-minute play, It Glows, the touching saga of two hapless slackers and the mysterious box that landed in front of their garage door.

This was part of a staged reading series which involved a bunch of other plays, and there were six actors who played all the parts in the evening. All I had to do afterward was thank the actors who were in mine.

One of the actors was tall and had facial hair. Easy. I spotted him as soon as I got to the front of the theater space. We had a great mutual admiration session, and then I went looking for other people to thank.

The other actor approached me. Unfortunately, I did not know who he was. Despite that I had just watched him play three parts, I did not know what his face looked like. Whoops.

We talked for a while, and I think I masked my confusion pretty well. Only later, when it was obvious to me who he was -- this was a separate conversation, in another part of the room -- did I casually play it off as, "Hey, man, we should stay in touch. You were great." Had I been in his shoes, this would have at least seemed odd.

It's times like that when I briefly think about disclosing -- which, by the way, I do when I can in casual situations, but hadn't had the chance to do here -- but I just didn't have it in me last night. I was riding the high of having just kept an audience in hysterics for eleven minutes. I didn't really want to pull out the blind card.

Like I said, it was a great night, and even that annoying incident didn't change that. I went out for drinks with the director and a few people from the cast, and we had interesting talks about the economy and the bubbles people trap themselves in. My vision didn't come up once. I even managed to guess what beer they had on the menu. People kept giving me compliments on my writing all night.

Every now and then, I get a break from being "that guy," and it's good to know that it's out there.

Footpath Rage

2009-04-08T11:50:00.000-07:00

I was walking through the farmer's market today when I heard a British voice behind me say, "For f***'s sake, come on!"

I stopped and asked the person who passed me if he was talking to me. His response:

"Walk in a straight line!"

He said this as he stomped away, so I quickly threw in, "I'm sorry sir, but this is a market, and people walk around." By that point, he was probably busy cursing someone else's back. There was a small part of me that wanted to inform him that his accent was crude and lower-class, but I refrained. It was probably enough for one of us to throw a childish tantrum.

Once, when someone asked me if I could drive, I joked, "Dude, I can't even walk straight." But unless I'm meandering aimlessly in a farmer's market, I don't think my footpath is much wavier than anyone else's. The odd thing about having a blind spot is that you're never entirely sure whether you're normal in any respect. But, then again, 20/20 vision doesn't seem to solve that either.

A Creative Solution

2009-04-05T18:59:00.000-07:00

The FDA has approved a treatment for what I have. It's not something I'd want to pursue at this point, but that's the first time I can say anything remotely close to the previous sentence, which is pretty damn cool.

My friend Andrew, who has the same condition, pointed me to the article (short and easy to read):

Implantable Telescope for the Eye

There are several reasons this isn't something I'd jump to get. First off, after about 19 years of having the exact same quirk in my vision (namely, a blind spot), I've gotten used to it. I can't really imagine what it would be like to see big things in one eye and the whole picture in the other. I already have spotty depth perception, and this probably would exacerbate the issue. I also can't imagine having to constantly switch from one eye to the other. Plus, there are the usual risks associated with any invasive surgery, especially one that involves as sensitive an organ as the eye.

I have the luxury of what is generally functional vision, so I have the choice. There are others with much worse cases of macular degeneration who could really benefit from this. And, hey, maybe I'll opt for it at some point. It's nice to know that it's out there at all, and that people are actually working on fixing this.

Today's Fib

2009-03-31T17:37:00.000-07:00

While I was teaching today, I asked a visiting actor to remind me what the title of a script was. He showed me the page and pointed to the title, which of course I couldn't read. But, at that moment, I remembered what the title was, said it out loud, and thanked him as if I had been able to read it.

So, was this a lie, or was I just being expedient? Do I owe everyone the truth of the moment? I really don't know.

The fact that I'm sort-of-blind came up later in the class, when I said that I didn't know the name of someone who had handed me a nameless script the week before. This, I contend, could have happened just as easily to a fully sighted teacher -- I only see these students briefly, twice a week -- but it was a good excuse.

Viewing Race

2009-03-29T14:07:00.000-07:00

Many weeks ago, I promised a post on race but never delivered. To those of you who asked for it, thanks for actually expecting me to live up to my word.

It's my experience that race has a lot to do with the face.

People usually think of skin color, but if you just looked at someone's hands or neck, you'd have a hard time distinguishing between a black person with a light complexion and a white person with a serious, well-worn tan. OK, maybe that wouldn't be too difficult for someone who pays attention to this stuff, but you get the idea. Color obviously plays a part, but not as big a part as it's made out to be.

So, how do people make snap judgments about race? Well, considering that I'm pretty slow on these things, I'm guessing it has something to do with facial features. It's the first thing that most people see, and it's the last thing I see.

Luckily, I'm rarely in a position where I have to tell the difference, but it can be difficult for me when I do. I do a lot of work with kids, and most kids (like most adults) imitate the voices of their peers. Accents can be very misleading. And, as I said, color only takes you so far. SO when somebody asks me where"you know, that short Hispanic kid" is,, after I'm done being offended, I actually have trouble telling who they mean. Most people don't seem to have that problem. They probably see patterns that I don't.

Really, it seems like a weird way to categorize people. The concept that because my face looks different from yours, I should give you a different classification, doesn't really ring true. As a white person living in a diverse city, it's very rare that anyone identifies me racially -- unless I'm working in a place where I'm in the vast minority. But, then again, as a "disabled person," I have my own minority to identify me. People also identify me by my face, although it's more specific to my eyes and where they're looking.

I just wonder where this comes from. Are we so tribally minded that, despite our vast similarities, we need to create distinctions based on such subtle characteristics as the shape of a nose? I wish I could say that I don't -- in the case of the nose, I physically can't -- but I do find myself trying to peg the race of the person next to me on the subway or on the sidewalk. I don't even know why.

I hear stories from black friends about women clutching their purses when they pass by, and it makes me angry, of course. But I think there's something more subtle and insidious about how comfortable we've become with labels, single words that are supposed to sum up the ethnic and cultural background of a human being. It seems so much more interesting and honest to think of a person in terms of their rich ancestry, coming from many parts of the world.

But that's not likely to catch on. After all, you can't discover a rich cultural ancestry by taking a quick glance at a face. At least, I can't. Can you?

By the way, if this topic interests you, you must check out this episode of Radiolab. They ask some startling questions about race and get unexpected answers. It's also one of the best podcasts available. Seriously. What, you don't believe me? Fine, be that way: don't be shocked and amazed. It's not my problem.

On the Road

2009-03-24T11:06:00.000-07:00

Today, I'm writing from a beautiful public library in Oregon, where I'm using an "adaptive technology" computer. It has a nice big screen, a copy of ZoomText (VERY fancy zooming software for the PC), and lots of gadgets I would never need.

It's fun to be able to type and see every letter I write -- not typical for me at all -- but I don't think I could get used to it. It's like hearing your voice echoed back to you as you speak. It's distracting, and it makes me a little self-conscious. I'd rather just write stuff and not care too much about the previous word. As I say, though: very fancy. I can see why they charge hundreds of bucks for it.

The first few times I came here, I checked with someone at the desk first, making sure it was OK for me to use it. Today, I decided to just sit down; and, sure enough, someone came over to say, "Just so you know, this is for people who can't use any of the other computers."

"That's me," I replied. "I'm legally blind." And that was the end of that.

I really should take it as a compliment that so few people guess that I have anything like a "disability." I'm 6-foot-2, able-bodied, in good shape, and under thirty (for a little while, anyway). None of that translated to "disabled," and even people who constantly work with the visually impaired can forget how deceptive appearances can be.

The funny thing about this expensive software that I'm using is the speech capability. It does like to talk. It took me ten minutes to figure out how to get it to stop telling me what my mouse was pointing at, or what word I was typing. But I can't figure out how to get it to read a freaking web page. I'm sure it can, really... but didn't they design these things for old people, who are scared to even press a button? I am not one of those people. I should be able to read a web page, even in Oregon. This is a free country, right? Are you with me, people?

Eh. Maybe next time.

Practice, Practice, Practice

2009-03-16T19:22:00.000-07:00

How do you get to Carnegie Hall?

Parents love to perpetuate the myth that if you practice often enough, you'll become a classical music superstar by the time you're nineteen. I maintain that no amount of practice would have vaulted me or my cello to even the least prestigious orchestra. Despite my musicianship, decent sound, and ability to memorize, my fingers never quite got everything right. I doubt that added practice would have solved that: talent does seem to count for something.

Still, practice also counts for something.

This weekend, I was waiting to cross a wide avenue when I looked for the "walk" sign. After a few seconds of searching around with my eyes, I spotted it -- or, at least, I thought I did. I saw an orange spot that was, from what I could tell, the "stop" signal. But I wasn't sure, and it took another second for me to figure out: Was that really an orange hand, or was it my imagination?

As it turns out, itwas real, and I waited for it to change, but it got me thinking. I use my imagination a lot. Just walking around the city or even looking around a room, my mind fills in all kinds of details that may or may not exist. This can be frustrating, especially when I turn out to be wrong -- You mean, that wasn't the toaster oven? -- but it does give me plenty of practice.

This may (partly) explain why, unlike many adults, I have no problem jumping from reality to imagination and back. I do it all the time. Like every other writer, I go through good and bad streaks and sometimes can't settle on what to write, but I rarely have trouble entering the world of my play. Where other people get stuck in the real, I slide back and forth pretty easily. I might have made a great Bush official... if only I wasn't so darn liberal.

Typically, people think of artists as daydreamers, people who have their heads in the clouds. There are plenty of us who are generally grounded and sane, but there's nothing wrong with a little daydreaming, or even a split-second nap from reality, right? A blind spot, a deaf ear, or a bit of dyslexia can be a handy thing, even for someone whose profession has nothing to do with art. It's good practice for the imagination.

By the way, to answer the question posed at the top of this page: Take the N, R, Q, or W trains to 57 Street. Alternatively, you can walk from several other subway stations, such as the F, 1, A, B, C, or D trains. No worries; you'll get there. Just don't ask to walk on stage.

Raising Cane, as a Subject

2009-03-09T19:34:00.000-07:00

Rich's most recent post got me thinking about an episode I had long forgotten.

When I was a kid, a social worker came to my house to offer services. I didn't really think we needed any, but my mom thought it would be worth finding out what was available.

He walked in with a big, friendly smile. When I told him what my vision issue was, he dropped the smile, and put on a sad, slightly stern face..

"Now, unfortunately, your condition is degenerative, which means it will only get worse," he informed me.

Well, "informed" may not be the right word: he was actually incorrect. While "degenerative" sounds a lot like the general name for my condition, "macular degeneration," I had it on good authority that the degeneration of my retina had already occurred. In other words, my eyes weren't going to get any worse. But the social worker would ear none of this from a twelve-year-old, and he proceeded to tell me what I needed to do.

"First, you'll have to get cane training," he told me.

"I don't have any problem getting around."

"Oh, but you will, because your issue is degenerative."

Clearly, this gentleman had just passed his vocabulary test, and I wasn't about to correct him again. He went on to inform me about the medial jobs that I should start training for now, for that inevitable day when I would no longer be able to see.

The social worker's intentions were good, and he seemed like a nice enough guy, but in retrospect, this was pretty horrific. Social workers should not be giving out medical diagnoses, and they certainly shouldn't contradict what doctors say. I happened to have been to experts in Boston who had been very specific about my prognosis, or else there's a good chance I would have either lived in fear of total blindness or had to visit another battery of doctors.

And, just for the record, there's absolutely nothing wrong with canes: they're a simple, low-tech, extremely helpful mobility aide. I just happen not to need one. I have plenty of other gadgets.

A Lone Thought

2009-03-06T09:39:00.000-08:00

A thought popped into my head a little while ago, when I precariously placed a plastic tuna salad container on the edge of a counter, and it promptly fell to the kitchen floor:

"Because of my vision, I can't afford to be stupid."

I don't really have anything to add to that. The tuna was fine.

Comic Books

2009-03-03T19:50:00.000-08:00

I used to love to read comic books when I was a kid. Actually, the truth is, I loved reading. Period. But comic books were cheaper, updated more often, and available at the newsstand when my dad picked up the Sunday New York Times. Hence, I read a bunch of comic books.

For some reason, I never really caught on to any one superhero. I was a DC reader (rather than Marvel) and ended up with a bunch of issues of The Flash and Green Lantern for some reason. Maybe I wasn't interested enough in flight or bodybuilding to read a lot of Superman, but it didn't hold my attention.

As my vision began to change, I had more and more trouble getting through comics, to the point that I could only really read the pictures without a magnifying device. At a point, even magnifiers didn't help, and I didn't have a color CCTV yet. So, at a point, I just dropped the habit.

This may explain my joy at first watching Spider-Man in a movie theater. Sure, there had been comic book movies before -- I had always been a big fan of Christopher Reeve's skinny Superman -- but here was the real thing, a true comic book universe portrayed perfectly on the big screen. I didn't realize it at the time, but the movies were about to enter an era when I could finally enjoy comic book reality again... even if I don't like reading the actual comics anymore. The Dark Knight was the latest in a series of films that have made me very happy, and even if there are a few duds in the bunch (just because I'm blind doesn't mean I liked Daredevil), it's definitely an improvement in my life.

I have a couple of friends who have kept up with comic books. I happened to have read the issue when a character named Superboy Prime was born, and my friends tell me that he practically destroyed the universe. That's nice. When they make the movie, I'll watch it. In the meantime, I still haven't see the sequel to to the first Hulk movie, and as bad as that one was, I do want to redeem it... and, simultaneously, please that little boy in me who wants to read about a big green guy who smashes things. Childhood is so innocent.

A Not-Not Public Service Annoucement

2009-02-27T07:20:00.000-08:00

I briefly co-hosted a sports talk radio show at my college, and every so often we were required to read PSA's (public service announcements). My co-host did the announcing. In retrospect, I could have memorized a few and done it myself, but it wasn't my top priority.

Anyway, my friend Andrew (who will hopefully write his own contribution to the blog soon) passed along this information for people with vision issues. I'm well aware that most people who read this are fully sighted, but if you know anyone who isn't, please pass this along... and thanks, Andrew!

We are looking for highly motivated and talented participants for the 2010 IISE course. To be able to reach blind and partially sighted potential candidates around the world we would like to ask you to send a small IISE advertisement to the friends and people in your networks. Please find below the advertisement in English. On the following link you can find the same advertisement in several languages: Advertisement IISE .
If your organization happens to have a Braille magazine, we’d be delighted if you could run the advertisement. Thank you very much for your help!

Attention! Attention!

Are you a blind or partially sighted person over the age of 18?

Do you experience social discrimination?
Is it your dream to change and improve the situation?
If yes, the International Institute for Social Entrepreneurs (IISE) is the right place to be.
The IISE seeks to empower people, especially blind and partially sighted, to become social entrepreneurs in your communities.

Candidates from all over the world who are at least eighteen and older and who can read and write English are invited to apply for this one-year program before the 30th of June 2009.

Computer literacy training, public speaking, fund raising, and management are some of the courses offered here.
For more information please visit our website at http://www.bwb-iise.org/

You can also write to file:///G:/aproject/ABWB/BWBnew/ENGLISH/BrailleWB@gmx.net or per regular post to:

Braille Without Borders - IISE
c/o P. Kronenberg
Vivekanenda Nagar, Vellayani, Ookode, Nemom PO , TRV 695020
KERALA, INDIA

or fax your questions to: Fax 0031848307904

Google Can Map My Heart

2009-02-23T15:25:00.000-08:00

Thanks to Google Maps, I will get to work tomorrow.

Having grown up in a gridded borough, I get a little confused when I get to Brooklyn. In fairness, I think everyone does. But sometimes I forget, despite its location in the city of New York, that Brooklyn does not have a convenient system of numbered streets and avenues that tell you how to get where you want to go.

This is where Google comes in. Whenever I'm Brooklyn-bound, or really whenever I'm going somewhere new, I like to scope out the territory on Google Maps. If I know a few street names and can mentally walk the path from the subway to the destination, it makes the journey a lot easier.

The only problem is that, for the most part, it's hard to tell north from south when you step out of an underground subway station. This is where the Street View tool comes in handy. Store fronts make excellent landmarks, and if I can see them ahead of time, I can orient myself before I start walking. This saves a lot of wrong-way travel.

I'm teaching at a school in Brooklyn Heights tomorrow, and although I've been there before, I haven't gone alone . Also, the path to the subway was a little complicated, so I didn't remember it. Google has allowed me to look around the outside of the subway station, walk down the correct street, and slide right up to the door of the school without getting up from my desk.

Now all I need is a Google tool that will allow me to teach my class without leaving my apartment. It's a theater class, so I'm guessing that one is only in the R&D stage.

Subtitles 2: The Reckoning

2009-02-20T10:22:00.000-08:00

Sometimes, the crowd is wrong. That lone, piping, contrarian voice is the one you ought to listen to. I was reminded of that last night.

Even before the Oscar buzz, I had been interested to see Slumdog Millionaire. Several friends had seen and liked it, and some recommended that I see it. One friend did warn me, by email, that a good portion of the film was in Hindi. But three or four others shrugged it off, saying that the subtitles were only in passing, and that much of the film was not subtitled.

"You'll understand what's going on," they assured me.

I should have been suspicious of this. It's the same language that people used to get me into Fellini films. But I went with the crowd.

Sure enough, more than half of the first half of the film is subtitled. Worse than that, the parts that are subtitled are the parts of the film that actually forward the story. I had no idea which young child was playing the main character as a boy. I had no idea that he and the other boy were brothers. I knew there was some kind of awful treatment going on, but not why or for what purpose. I did figure out what had happened, but not until the second half of the movie, which is completely in English.

It's hard for me to define where the line is between films that rely too heavily on subtitles for me to understand them, and films that have subtitles but do not depend on the viewer to read them. I will say this, though: Slumdog crosses the line, and Gran Torino does not.

For various other reasons, I think Torino is a much better film anyway. Apparently, the Academy disagrees. Maybe, in this case, I am that lone, piping voice in the wilderness. Or maybe I just don't like Bollywood.

Yes Wii Can

2009-02-17T15:54:00.000-08:00

I can, at least. Sort of.

The first time I played a Wii, I figured out pretty quickly that bowling was my game. I'm not a terrible bowler in real life, but I'm a better Wii bowler because it doesn't require any vision at all. You just press a button and move your arm. I can see well enough to tell what pins are left, but even if I couldn't, I would do what I do in a real bowling alley: ask someone.

Wii Baseball and Wii Tennis do require some eyesight, mostly for the timing. I may never get the hang of the baseball game. Much like real-life baseball, it really does help to see that little ball moving through the strike zone so that you can hit it. Tennis might be another story.

This weekend, I played tennis -- doubles -- and helped my teammate sweep every match. I'm still not sure how I did this. I was able to sit close ebnough to the screen to see the basics, but a lot of it was guesswork. Maybe the rhythm of the ball is predicatbale enough for me to guess correctly. Maybe my teammate sent psychic messages. Whatever the case, we won a lot, and I really did not screw up too often.

For the record, real-life tennis is my worst sport. At least I used to watch a lot of baseball. An old friend used to insist to me that he could teach me how to play. He might be right, but if it meant running around on a clay tennis court in the summer heat, I woudl probably have to pass. The Wii allows you to play in room temperature. I prefer that.

Subtitles

2009-02-10T09:03:00.000-08:00

People used to tell me I should see Fellini films. The conversation would go something like this:

FRIEND: You should see Eight and a Half.
ME: Isn't that in Italian?
FRIEND: Yeah, it's amazing.
ME: I can't read subtitles.
FRIEND: You don't have to read the subtitles. It doesn't really make sense anyway.

Well, I saw it, and I'm pretty sure it made about 100% less sense to me than it did to anyone else in the room. Call it a wild guess, but I'd surmise that the subtitles did help a little.

Fully-sighted people don't understand just how helpful those little words at the bottom of the screen can be when every word of the film is in a foreign language. I do speak French, but I don't understand it when other people speak more than a sentence at a time, so I'm pretty much relegated to films in English. My French class took use to a film about a French queen once, and at the end of the movie, I figured out who the king was.

Having said all that, it's also pretty distracting to sit in a movie theater and have somebody whisper the subtitles in your ear. It's necessary sometimes: I went with friends to see Kill Bill, which we expected to be in English, and half of it turned out to be in Japanese. Had it not been for my roommate reading me the subtitles, it would have been a lot like Fellini (except for the bloody sword fights). But I do prefer to just watch the film and pick up on what's said by the context, if possible. I'd rather just hear the actor speak and concentrate on the stuff I can see.

I saw Gran Torino last night. There were a few subtitles, but it was brief, and I could tell the tone of the lines without knowing the actual words. People did laugh, and knowing the subtitles would have clued me in to the specific joke, but it was funny to me too. And, luckily, they stopped subtitling once we saw the Mung families through the old bigot's eyes. I thought it was great.

Incidentally, my favorite film set in a foreign country is Lost in Translation. There are no subtitles. We're all in the same boat.

I Am Backwards

2009-02-04T17:01:00.000-08:00

I just might defy science.

Dr. Oliver Sacks is one of my favorite all-around thinkers. I've been reading his latest book, Musicophilia, which describes a bunch of neurological oddities he's come across that have to do with music. Even if you know a bunch of these stories (as I did before starting it), it's still an interesting read.

Anyway, I just finished a section on people who lose their vision and, consequently, gain musical talents. I've never been a musical genius by any standard -- maybe I'm not blind enough for that -- but I do have a good ear and can make a pretty good sound on the cello. It's not the blindness, though.

Here's the thing: everyone in my family is a musician, and I'm the only blind-ish one. In fact, I probably have the least interest in music of anyone in my family. My musical tastes are broader: I like and know a lot more about rock and jazz, and my grasp of contemporary classical music (nice oxymoron) probably outdoes my mother and sister. But when it comes to the actual attraction to and practice of music, I lag far behind.

My parents were both born into non-musical families. My father was a conductor, a cellist, a pianist, an accordion player, and a music educator. He could look at a page of a score and immediately say what piece it was from. He would sit on subways and read orchestral scores the way most people read novels. My mother trained as an opera singer, studied music teaching at Harvard, taught choruses, and currently plays the flute as an experienced amateur. My sister majored in violin at one of the top conservatories in the world, and now plays with orchestras and chamber groups.

Me? I did take cello lessons for sixteen years, many of those by choice., but never even considered a career. I scraped by to get through recitals. In orchestras, I faked my way through rehearsals, memorizing the tough parts but guessing at the rest. No one confused me for a professional, and if anything, I got away with more because people knew I couldn't read the sheet music.

Long story short, losing vision did not make me a better musician. I do have the ability to recognize music pretty quickly, but I blame that on my family upbringing and my genetics, not on the eyes.

Dr. Sacks would be so disappointed. But, on the bright side, I just found out that we live in the same ZIP code. I might see him around the neighborhood. Or, at least, I might bump into him.

Better

2009-01-31T21:38:00.000-08:00

Tonight's Saturday Night Live bit about David Paterson was a considerable improvement. I actually laughed, which was not the case last time... but, again, whether or not it's funny is subjective and not the point. To put it simply, this one didn't focus on his blindness. And as the governor himself would probably admit, there's plenty else to lampoon.

It's probably unfair to say that he's "not a good governor," considering the circumstances he's inherited, but it's just political wisecracking. For the record, other than making a circus of the senate appointment, he seems to be doing pretty well. And, of course, they keep referring to his having done cocaine once upon a time... just like the current and former presidents.

But, really, the only part that still bothers me is the bit about being disoriented and lost behind the desk. It's just not him. And I don't think people know that. But I guess the only way that's going to change is if the governor, or someone like him, changes the image with a more memorable one.

I have to admit, it was a little surreal to see him take out a pair of binoculars and pretend to read something. I don't do that with binoculars, but I use a monocular (you can guess what it looks like) to do the same thing for spot reading. It's awkward, difficult to do, and just generally an inefficient way to read stuff. I never thought it would end up as a gag on SNL.

Live and learn, right?

Look, Honestly

2009-01-26T07:44:00.000-08:00

I was planning to post about race, but then I heard this segment on one of my favorite podcasts, On the Media. Suddenly, my world has changed.

From the interview:

ROOKE GLADSTONE: The character who plays you in the show, Cal Leightman, says that liars are more likely to look at you while they're telling the lie because they want to see if you’re buying it.

DR. PAUL EKMAN: Well, it’s more than that. They also believe this false idea that if you look away, it means you’re lying, so they don't want to be caught, so they look at you more than anybody else ever looks at you. [LAUGHS] And so, in fact, maintaining unbroken eye contact very often suggests that you’re dealing with a liar.

The myth of the honest person who looks you in the eye when he tells the truth is... well, just that. A myth. The fact is, since that myth is out there, liars often work harder to look you in the eye. That's been my experience too, in having to figure out whether people are lying or not. I'm often wrong at the time, but in hindsight, many of the people who lie to me have done so with unblinking focus.

If you think about it, what would prevent a liar from looking straight at you in the first place? Shame? Liars have significantly less shame than people who value truth and facts. I won't comment on the previous administration. No, the only people who have actual barriers against eye contact are people like me.

I can't say for sure, but it's a pretty good guess that in job interviews of the past, when I haven't revealed my vision issue -- nowadays I always do --potential employers would think of me as shifty-eyed and probably dishonest. I hope some of these people get a wind of the new Fox show that Dr. Ekman is advising. In the meantime, since I do have employment as a teacher, I get to meet hundreds of kids a year and subtly erode the myth of eye contact and honesty. I can live with that.

Now I have a couple more days to think about that race thing.

An Open Letter To Governor Paterson

2009-01-22T06:49:00.000-08:00

Dear Governor Paterson,

As I'm sure you know, Hillary Clinton has now officially joined the Obama administration. Due to overwhelmign approval by the senate, she is now the Secretary of State. This will make it rather difficult for her to continue her duties as the junior senator from the state of New York.

You have hinted, during this long and laborious process, that you will name Senator Clinton's successor soon after her confirmation. The rumor mills have given Caroline Kennedy the best odds, and I am aware that you have interviewed her along with the rest of the potential senators.

As one partially blind person to another, I have a simple request for you:

DON'T.

You have been a great spokesman for those of us who, despite our disabilities, possess skills and qualifications for jobs. We deserve employment, not because we deserve special treatment, but because society should not waste our talents.

There are many great potential senators in this state, all of whom have extensive legislative experience. Do for the senate slot what you would want others to do for you or for me: pick the candidate with the best qualifications, regardless of gender, race, orientation, disability, or family name.

Thank you for your efforts to keep this state solvent in tough fiscal times.

Sincerely,
Me

P.S. As I wrote this letter, I found out that Ms. Kennedy withdrew her name from contention last night, making my plea irrelevant and moot. I don't mind.

I Have a Job

2009-01-16T14:27:00.000-08:00

Governor Paterson often calls attention to the staggeringly high unemployment rate among the legally blind: nearly 70%, by some accounts. But, as a friend recently reminded me, we are not statistics.

I got a call this afternoon confirming that I have been hired for a job.

It's not full-time work, but as a teaching artist, my goal is to cobble together enough part-time work to support myself as I write plays and participate in theater. Sometimes, I get paid to do all three.

Most organizations that hire teaching artists keep a roster of them. I already belong to one such roster. Getting onto this one involved a highly competitive interview process, two separate stages of training, a third stage of training (if you make the cut-off), and a trial teaching unit, where they send you into the schools. This process started when I interviewed way back in the spring.. It ended today.

This still means that I have to spend a good amount of time looking for work, but I'm guaranteed a certain amount of employment now, which certainly takes off some pressure. Interviewing for jobs is hard enough, even if you don't have to deal with the whole, "I can't make eye contact, but please hire me anyway" thing.

I think I can actually relax this weekend.

Ah, Memories

2009-01-13T19:15:00.000-08:00

Today, I went to meet up with an old friend who is starting to have similar eye issues to mine. Luckily, it's happening much later in life for him, and his sight is A-OK in one eye, so he can still drive.

The odd part was walking into the doctor's office. It was a big retinal specialist's place; I had heard of it, but I hadn't ever gone there, even when I was making the rounds as an undiagnosed kid. My friend was still being treated, so I took a seat in the waiting room.

Ophthalmologist's offices are strange places. The patients all speak a little more loudly than you would expect, and no one asks them to fill out forms with tiny print. No one expects them to be able to read them; if they could, they wouldn't be there in the first place.

This was one case where I didn't need to identify myself as not-not-blind. I told them what I was there for, and they casually mentioned a second waiting room where I could look. I looked around for a moment, flipped on my iPod, and tuned out.

When I was ten years old, I spent a lot of time in places like this. I remember the lights being brighter. Other than that, I have no recollection of lots of patients walking around, not sure exactly where they're going, and lots of doctors who know exactly where they're going. I don't know what my state of mind was, but I don't think I was aware of anyone else have vision problems.

I do remember long office visits, hours at a time, going from specialist to specialist and machine to machine. At first, when they said, "Open wide," I opened my mouth. After a while, I got used to it, but my dentist was confused when I opened my eyes at his command. Once you've been to enough people in lab coats with bright lights, the habit does set in.

I had the half-thought of stopping one of the doctors on his way out and asking if they've come up with a cure for me yet. But I think I'll save that for the guy who predicted a cure "in five years." If my math is correct, that would have made it 1996. Yup.

Menus

2009-01-10T15:10:00.001-08:00

Why do people spend so much time reading menus?

The rational part of your brain runs out of juice after seven or eight choices, and most menus have twenty or thirty at least. Why not just ask the waiter what's good, make sure you're not allergic, and order?

When I go out to eat alone (which, yes, is pretty rare), sometimes I take out a little telescope ("monocular") and look through the menu. But sometimes, I just like to wing it, and the food I get is inevitably delicious. And I haven't spent all that time reading lists of ingredients, or trying to brush up on my Italian.

I think what I'm trying to say is that if none of us could read menus, we'd all have a lot more time on our hands, and we'd eat better. Plus, since specials tend to be more expensive, restaurants would make more money.

More productivity? Better diet? More commerce? Sounds like the solution to the economy to me. Mr. President-Elect, it's time to ban menus.

iPhone = Guide Dog?

2009-01-08T13:23:00.000-08:00

Maybe. Someday. I don't need a guide dog, but sometimes I wish I had one anyway. Dogs are awesome.

Anyway, my friend Amy drew my attention to a great New York Times article about T. V. Raman. I had never heard of Mr. Raman (as the Times so politely refers to him), but I've heard of most of his innovations in accessibility. I had no idea the same person was responsible for all of them.

For the Blind, Technology Does What a Guide Dog Can't

I'm particularly grateful for my computer's ability to read PDF files aloud. It comes in handy all the time.

As for the iPhone that can tell you which direction to walk in, it's probably not that useful to me; I don't have any problems getting around. I do like that my new iPod talks to me. It tells me what songs it has, what's playing, and what menu is up on the screen. It's awesome. I named it Hal.

DMV Breaks Speed Limit

2009-01-05T11:54:00.000-08:00

Sometimes, people who know that I'm legally blind ask if I can drive. This isn't as crazy a question as you might think: drivers make extensive use of their peripheral vision, and mine is well above average. Unfortunately, you use the middle part to see stuff like signs, curves in the road, small children, and large animals. No one should let me drive.

I do have the equivalent of a driver's license: the New York State Non-driving ID Card. Lots of fully sighted people have this. New York City is full of people who have never learned to drive because they never needed to. I would have liked to, but it doesn't affect my life while I live here.

Last month, I got a notice that my ID was about to expire in February. I finally got around to it today. I filled out the form at home, grabbed my social security card (the flimsiest piece of Federal ID in the world), and headed down to the DMV "License Xpress" on 34th Street. I expected a long wait.

The great thing about the Xpress branch is that it's small and open. They only take care of renewals and changes, so they only need a few windows and stations to take care of everyone. They're also surprisingly friendly. They call you "dear, honey, buddy, my friend," and just about anything else you can think of within the limits of polite society. What's more, they're efficient.

I told the clerk at the ticket counter that I was legally blind, and she didn't flinch. She just handed me a ticket, told me what number it was -- the print was actually large enough for me to read easily -- and told me what number they were calling just then. A clear, audible electronic voice announced each number. Within ten minutes, my number was called, and after a great conversation about rent prices in NY and PA, I was on my way with a temporary ID and the promise of a new one in two weeks. Done.

I don't know how many places there are in the world where a partially blind person can walk into and out of a government agency in fifteen minutes, having secured a state identification card and renewed faith in humanity. All I can say is, thank goodness for the New York State Department of Motor Vehicles.

Yes, I did write that.

A Toast

2009-01-03T08:28:00.001-08:00

Several years ago, at a party , I ended up in a small group near the table of booze. We had each just poured some wine, and a striking woman offered a brief toast. We all clinked our glasses. After the toast, the striking woman chided me for not making eye contact with her. She recited a superstition about not making eye contact during a toast. I won't repeat it here, but I will say that it is not true. I checked.

Whether or not you are physically capable of making eye contact, and whether or not you realize that I'm posting this well after New Year's Eve, let's toast to a great New Year, and let's hope for the best from a new president and a sort-of-new congress. I believe the original title of Stephen King's The Shawshank Redemption was "Hope Springs Eternal," so may we all (SPOILER ALERT) slowly chip our way out of prison, crawl out through three football fields worth of sewer, and revel shirtless in the rain.

Happy 2009, and thanks for reading.

I Play Broomball

2008-12-28T13:31:00.000-08:00

No one expects the goalie to be blind. I live to defy such expectations.

Partial or otherwise, blindness is usually a disadvantage when it comes to playing sports. There are plenty of exceptions to this: a marathon runner, a dog-sled racer, and an old friend who plays basketball comes to mind. Due to my 6+ foot height, people used to expect that I'd be good at basketball. I'm not. It's not because of blindness; you need coordination first.

Really, I was never good at sports, even before I lost the center of my vision. I had enough trouble catching, throwing, and running. Once I lost the ability to see the baseball or the football, the game was pretty much over. Even once I reached my full height and started to become comfortable with my build, the coordination improved dramatically, but I still couldn't really follow a ball. So, I stuck to watching pro sports on TV and listening to sports talk radio, and left the playing to those better equipped.

Then, a few years ago, a friend called me up with a strange proposition. He and a bunch of my friends were going to rent an ice rink, in the suburbs of Philadelphia, and show up with a bunch of brooms and a few old tennis balls.

"I can't skate," I quietly protested.

"We're not going to skate," he explained. "We're going to walk on the ice with our shoes. They're going to leave the ice all chewed up for us, so we won't slip around too much. We'll play hockey with the brooms. The goalies get push brooms."

The game is called Broomball. It has few or no rules, and no one keeps score. Legend has it that a bunch of drunk Canadians were sweeping out an attic once, when they found a ball and decided to play hockey with it on the frozen pond. It's popular in patches of the United States now, and most of the players I know live in sunny, warm Los Angeles.

I play the game every year, right around Christmas. For the most part, I tend goal. I did try playing out on the open ice once or twice, but I'm too slow on the ice to ever get near the ball. This is not a problem at the goal.

You may wonder, "How can a not-not-blind guy play goalie?" The answer is, not very well. I have a habit of letting in the shot that is right in front of me, and my reflexes border on lame. However, I'm better than most people, including myself, expect. My peripheral vision gives me quick reaction to stuff that comes out of the corner of my eye, and I can almost always tell exactly where the ball is from watching the rest of the players. My spatial reasoning is good enough that I'm just about always between the ball and the goal.

This all adds up to a consistent pattern. I can keep the ball out of the goal for the first twenty or twenty-five minutes I play, and then things start to go downhill. As members of the defense get tired and people start getting more unchallenged shots on goal, I start6 breaking down -- mostly because it's tough to clear the ball out when you can't really see it. I get a bunch of saves during the game; I don't keep track of how many. Again, this is a sport where nobody keeps score.

I'm not sure how many of my fellow players know that I'm partly blind, and there's something comforting about the fact that nobody comes up to me, open mouthed, stunned that I can block a goal at all successfully. People have far too much fun playing the game to think about such things. SO do I.

Behind the Mask

2008-12-23T07:36:00.000-08:00

Last night, a friend mentioned that after having seen the Saturday Night Live sketch, she wondered what bad thing Paterson had done to be ridiculed like that. It was an honest question. Most of the time, that kind of satire comes from the need to attack someone who abuses power.

A bunch of people have been asking about what kind of a governor David Paterson actually is. Bill Moyers interviewed him on the budget, and it's worth watching (at least a little of it):

David Paterson on PBBS

My main issue with the budget is the education cuts. (Disclaimer: These cuts affect me directly. Most of my employment is in some way connected to public education.) The public schools are one of those "invest now to spend less later" things; when you cut back on education funding, you end up costing the state a lot more down the road. Same goes for preventative health care, which only Obama and Huckabee even mentioned during the campaign.

I have other qualms about the budget, but the main point that Paterson makes is hard to dispute: namely, that we have to balance the budget, and there's no pain-free way to do it. You can't faul him for being too honest or reasonable. As far as abuse of power goes... well, hey, he hasn't been in office too long. So far, so good.

Makes you wonder why SNL decided to go there.

Ask a Blind Guy, Part 4

2008-12-20T14:06:00.000-08:00

Q: How do you make a Venetian blind?

A: Good question. It’s a bit time-consuming, but well worth the effort. Here’s how:

First, make a series of long, thin flaps that are the width of your window. Make small holes at either end of the flaps, three on each side. The flaps can be made of treated wood, plastic, or any other weather-resistant hard material.

Next, use thin but durable string to tie together the flaps. The holes will come in handy for that.

Once the flaps are strung together, build a contraption for the top of the window that will hold up the flaps and leave strings dangling to lift the flaps all the way to the top or simply open and close them. Attach this contraption, along with the flaps, to a window that faces due west. Leave the flaps down and closed.

Finally, invite a native of Venice to your home, for the stated purpose of watching the sun set on a clear day. As he approaches the window, quickly open the blinds so that the sun shines directly into his eyes. Force him to stare at the sun for at least twelve minutes. If, after this, he can still see, poke out his eyes with a pen knife. That should do the trick.

Responses

2008-12-18T14:08:00.000-08:00

Thought you might be interested in the discussion that broke out on another website, in reaction to my last post. The names have been changed to protect the innocent. And if you're wondering who, really, is innocent in this world, you are the only one who has ever had that thought. Ever.

Re: Live From New York, It's Deeply Offensive

Sally: I saw it and was completely offended - such poor taste and not at all funny. Thanks for posting.

Meredith: that was an amazing blog post. I don't live in NY anymore, but when he stepped into office for Gov. last year, i was elated. I've heard the employer's jaw drop, and have spent my whole career not only trying to prove to men in m sexist field that I am just as capable of them to do the job, but also I can do it just as well while being legally blind.

SNL is really good at making fun of Bush, but when it comes to the blind jokes and albinism jokes they sure fail horribly.

It hurts me that if they did this same skit but had them playing a mentally retarded person the people who are the heads of the disability act would be in an uproar about it and have SNL give a public apology.... why can't the blind get the same back-up?

Mariam: I saw it, and frankly, I found it hilarious. That's what comedy is all about folks. Some things are just NOT PC. Comedy is deadly serious and it's never been about being politically correct. That's what makes it funny. There are only a few topics that are really NEVER funny. Abortion and rape are two of those. Aaaanyway, for another hilarious video from SNL go to their website and search for "Lawrence Welk"

Mariam: By the way, the sketch did not call him a freak.*

Meredith: oh believe me, i laugh at things. Please, I have albinism. I'm always the evil villain in every movie that has "an albino". I go nuts when people freak out about the smallest things. I was for the movie "blindness" and felt people over-reacted to it, and when others freak out about the evil albinos i normally fight back with "it's not always about us."

This sketch, however, I didn't laugh once. I didn't walk away furious, like I did with "Not Another Teen Movie", but i didn't think they did a good job in the "funny" department either.

Josiah: agreed. ideally, Patterson will do the show when it returns in Jan. and get some free press.

*True, he doesn't say, "I am a freak." He does compare himself with people with a "gamy arm" and refer to the "freak-bag," where he plans to get his senate appointment. Then he announces that he wil pull his own name out of the freak-bag. Yup. He does not call himself a freak.

Live From New York, It's Deeply Offensive

2008-12-16T18:19:00.000-08:00

I just got around to this week's NBC Saturday Night Live. The Weekend Update sketch about David Paterson was... well... Here, if you haven't seen it, judge for yourself:

Seen it? Good. Here we go:

I didn't find this funny. If you did (and I'm sure many did), this doesn't make you an anti-blind bigot. People who laughed at Amos and Andy weren't necessarily racists. We instinctively respond to stereotypes that are ingrained in the culture, and there's nothing conscious about a laugh. We don't choose what we find funny and don't.

Having said that, this ranks as one of the most offensive portrayals of a disabled person in the history of television. It's garbage like this that makes it hard for people like me to get a job. I'm lucky enough to have several right now, but it took a hell of a lot of work to get them, and I'm in the vast minority.

The first problem is the cheap laugh. I would be the first to admit that the governor occasionally appears disoriented. I probably do too (although, my vision being superior, not nearly as often). He is not actually disoriented. He has a facile mind, an outstanding memory, and one of the sharpest wits in politics. He would have written a much funnier sketch.

Besides, making fun of someone who appears to be disoriented because he's mostly blind is a little like making fun of FDR for being wheelchair-bound. It's not funny on its own. Now, if you're writing a Sketch where FDR's wheelchair gives him super powers... or if Paterson were secretly Daredevil... I don't know. But the mere fact of his looking a little lost is just a crappy thing he has to deal with.

Next, the governor is not a "freak." He is blind in one eye and mostly blind in the other. He also has degrees from an Ivy League university and a law school, but was turned down from his first job because they didn't think he could handle it. Maybe they thought he was a freak.

Third, Governor Paterson was not"comically unprepared" to become the governor of New York State. He was the Lieutenant Governor. He was the minority leader of the New York State Senate, a veteran of public service for over twenty years, and one of the only Albany politicians people actually liked or respected. Upon being thrust into office (yes, by a sex scandal), he quickly made peace with the Republicans in the state senate. And while Albany has since returned to its usual bickering, Paterson has already proposed his recession-minded budget, weeks ahead of schedule.

Most bizarre to me, the sketch gets a few things just plain wrong. It implies that Paterson is from upstate. He's from Harlem. It also refers to him "loving cocaine," and, yes, he admitted to having done it. How many politicians have admitted that now? Isn't that a requirement for office? He doesn't do it anymore. And the implication that he's often in the middle of sex scandals is a funny idea in itself, considering that the only one who ever reported that he cheated on his wife was him.

Governor Paterson is not perfect, and Saturday Night Live is not evil. Paterson is considering cutting the education budget by nearly $700 million, and SNL put on a vaguely funny sketch about a lamp musical. I can't help but think, though, of those ridiculously low employment numbers for the blind and deaf, and then wonder if Lorne Michaels and company have any idea what it's like to mention the words "partially blind" or "Legally blind" and hear a potential employer's jaw drop from across the room.

David A. Paterson, odd as he may look, is the nation's most prominent advocate for the rights of the disabled. It's offensive enough to make cheap jokes at the expense of his eyesight. It's even worse to reinforce the stereotype that faulty eyes imply a faulty mind.

Fumbling Through the Mailbox

2008-12-09T18:03:00.000-08:00

I've been getting some compliments lately on the post from October 22, "Yes, I'm Talking to You."

Amy was astute enough to point out, in a comment, that I'd be considered respectful in Pakistan for "averting my eyes" from elders.

The larger issue, were I to move to Pakistan (and with New York rent prices what they are, who knows?), would be the language thing.

To put it politely, I stink at other languages. I've always had a good ear for accents and such: I can speak French so well, at moments, that it impresses French people. Then they speak back to me, and I have no idea what they're saying. Most Americans could get by in France by reading signs and searching their iPhones for translations. My disadvantage in a foreign country would be considerable. Plus, there's the whole Jew thing.

So, thank you, Amy, but I think I'll stick to the Big Apple.

If you want to add your two senses. leave a comment or email me at notnotblind@hotmail.com.

Poll Results

2008-12-07T18:01:00.000-08:00

Thanks to everyone who answered the poll. Here's how it broke down:

Q: How many famous blind and partly blind people can you name?

75% could name less than five
18% could name between five and ten
6% could name more than ten

I could only count six:
Claude Monet
David Paterson
Ray Charles
Stevie Wonder
Blind Sheikh Abdel-Rahman*
Helen Keller
Louis Braille

*You may or may not know that this fine gentleman is a hero to many terrorists. "Famous" does not necessarily mean "good"; Hitler was once named Time's Man of the Year.

Anyway, a comment on the 11/30 post lists some other notable blind and not-not-blind people I hadn't thought of (or heard of, in many cases). For instance, I had no idea that Pulitzer was blind... although if you think about who's gotten his prize for theater, it starts to make sense. Dinner with Friends? Come on!

(Just kidding... blind people have better taste than that.)

Point of Focus

2008-12-04T06:49:00.000-08:00

I just found another legally blind blogger with a LOT to say. He's a photographer and a judo expert with a different condition than mine but a bunch of similar issues. You should check it out:

The Perfect Focus

The current post (dated Nov. 23, 2008) has a great update about iPod accessibility, which answers a few of the questions I had last month. Apparently, Mac has finally given into the throngs of us not-perfect-seers and has decided to include talking menus in the new Nano. Hooray! MacWorld put out a great video, which you can also find at the link above.

I should take this moment to point out that my blog's spell checker doesn't recognize iPod or Nano as actual words. Huh.

Open Shuttle

2008-12-02T13:39:00.000-08:00

Subways are easy for me. Newer trains announce the stops in clear recorded voices, but once you get to know a line, it's easy to know what stop you're at -- and they're usually clearly marked. Also, it's easy to tell where you go after you get out of the train. See staircase. Walk up staircase. Exit through turnstile. You are now above ground.

The one thing that always confuses me, no matter how many times I disembark, is the shuttle from Grand Central to Times Square. This should be the easiest train in the world: it makes two stops, Grand Central and Times Square. Getting out at Grand Central is easy. Getting out at Times Square is not.

Coming away from the shuttle tracks, I see what looks like a sea of fluorescent lights and signs. There are no 90-degree angles. I have enough trouble swapping from dark to light, so lots of bright lights can throw off my directional sense. Walking forward is an act of faith, and walking to the left or right runs the risk of accidentally stepping through a station exit or, heaven forbid, the N/R/Q platform.

After a lot of wending and weaving through the crowd, I end up at the stairs that lead up to the 1/2/3 trains. These stairs are clearly marked with yellow and green, to indicate to weary travelers that, yes, these are steps, and if you continue to walk forward without picking up your feet, you will injure yourself. So don't.

It's great to live in a city that allows you to feel like a human being, even if you don't drive. It feels even better to know that the one place that constantly turns me in circles is the same place that everyone else dreads. Hooray for Times Square and its equal opportunity annoyance.

Poll!!!

2008-11-30T16:24:00.000-08:00

How many famous blind and partly blind people can you name? Once you've figured it out, you can vote in the poll to the right-->

Rules:
-Fictional people don't count. Sorry, Mr. Magoo.
-Those who wear thick glasses are not partly blind. I know, I love Woody Allen, too.
-I can't think of a blind pety, but if one exists, go for it.

The reason I ask is that I'm surprised at how few I can name. You can post your list to the comments section, and I'll post my own list in a week, once we close this thing up.

Another Sappy Gratitude Post

2008-11-28T13:17:00.000-08:00

I am thankful for my disease.

OK, there, I said it. I can claim membership in the club now.

True, I don't have a terminal illness. I can thank my lucky stars that I don't have the physical pain of cancer or chemo, nor the mental anguish of wondering when I'll die. I'm healthy (knock on wood), in good shape, and planning to live a long and fruitful life, god/fate/luck willing.

I also don't have a contagious disease. Thankfully, I don't have to worry about how people might react, or whether they're fully informed enough to be willing to shake my hand, hug, or kiss me. Even with all the education out there, people with HIV and AIDS are often treated as modern-day lepers. (From what I know of history, a leper used to be a lot like a Bush voter in Brooklyn. Everybody just keeps their distance, and so does the leper.) No question, my day doesn't require nearly as much bravery as anyone with a deadly communicable disease.

And then there's the fact that I'm not even completely blind. Much as I like to refer to myself as "the blind guy," it's only a small patch. Fully blind people put up with way more discrimination than I do and have barely any of the access to, well, anything. I'm thankful for the vision I have, and while I'd like to think I could still make a full life for myself without any vision,it's still pretty damn cool to have most of mine.

I am also thankful for the effect Stargardt's disease has had on me. It has forced me to be a more social person, to be kinder to people around me, and to forge a unique niche for myself everywhere I go. I like that I can't fit neatly into a pre-made box. I like that I get to constantly surprise people with what I can do. And I like that my disease is harder to spell than my last name.

I am not prone to making statements such as, "This disease has affected my life for the better." First off, it's probably not true -- 20/20 vision comes in handy once in a while -- and second, there's no way to know. I certainly would welcome a cure, if it arrived at my front door, pre-tested and ready to go. But, hey, I can't really complain. I have a job (several, in fact) and a decent life with great friends. Who wouldn't be thankful for that?

What's that you say? Your cousin Dan wouldn't be thankful for that? Well, he can go eat somebody else's turkey, because my leftovers are for ME, mister. Stupid Dan.

Deli-cious

2008-11-25T19:31:00.000-08:00

Ah, lunchtime.

I get pretty hungry around noon, and if I'm in an unfamiliar place, the most stressful part of my day can be finding that ideal place to get a sandwich. This can be a particular challenge when you can't really read the signs, or tell the difference between a diner and an auto parts store.

My current commute includes Grand Central Terminal (not the "Station": that's a post office). A few weeks ago, I spent a good fifteen minutes trying to find a place to get lunch that didn't break my bank account or just sell desserts. The moment I heard someone ordering pastrami on rye, I rushed to the end of the line and waited my turn. Finally, I arrived at the counter and asked for a roast beef and cheddar.

"No cheese!" came the response.

I had stumbled up to a kosher deli. Had I known that, I would have ordered corned beef. I canceled the cheddar.

Today, after a short day of work, I arrived at the terminal and went straight for the deli. I knew exactly where to go. There was no line. I went right up and asked for a corned beef on rye.

"Next one over," came the response. I was at a Chinese food counter.

The Chinese food guy replied pretty quickly, as though it happens a lot. Maybe a lot of not-not-blind people wander through Grand Central, looking for a good Jewish meal. Maybe the hunger itself drives Jews and those who love Jewish food to temporary blindness. I don't know. But I do know that the corned beef was excellent.

Trapped in the Music

2008-11-22T20:17:00.000-08:00

A fully blind man once told me that it's hard for him to be in a room with bad music . It's considerably harder to plug up your ears than to close your eyes.

My big problem is wrong notes. When I was a kid playing cello in orchestras, I had the awful habit of laughing out loud whenever a brass player let out a solid "squawk." People understandably did not like that. I learned to hold it in, but I still cringe at concerts when I hear a funny sound.

It's hard for me to tell whether it's the musical training or the low vision that gets me to pay so much attention to music. When a movie starts, the first thing I ask myself is who composed the score. (Most people are busy reading the opening credits.) I'm pretty good at guessing; that's either because of all those music classes and lessons over the years, or because no one else cares. Probably both. Whatever the case, I end up with strong reactions; and, like my blind acquaintance, it's pretty unpleasant for me to hear music I don't like. As a result, I've done my best to like as much music as possible.

It works the other way, too. I was working with a director once who made a negative comment about Miles Davis. After that, I knew we'd never see eye to eye... so to speak.

Wild Blue Yonder

2008-11-11T20:47:00.000-08:00

I'll be taking a break for a week. Right now, I'm loading up my Shuffle for the plane flights to and from my ultimate destination. I'm hoping to finish Don Delillo's Libra on the trip... all 20+ hours that are left. Audiobooks have gone through so many evolutions... I just hope I don't accidentally press the "back" button and lose my place.

Read, Memorize, Eat

2008-11-09T19:51:00.000-08:00

I have a rule: I do not read aloud from pieces of paper. Ever.

OK, so I broke that rule today. Sort of. But it's generally a bad idea.

Even if I write something myself and use large, clear print, I still have to hold the paper close to my face. So close, in fact, that it muffles what I say. And then, inevitably, there comes a word I can't immediately read, due to my eye bouncing off to some random place (as is its wont). I lose track of where I am, forget where I was in the reading (nervous anyway), and thus start to stutter, halt, and add an "uh" or an "um."

None of that inspires the listener. It certainly doesn't inspire me.

Today, at a professional development session that involved writing dialogue (I do have good jobs), we all wrote a page of a scene. We started going around the room, reading our writing aloud. I immediately started to strategize: should I ask someone to read it aloud? Should I just pass?

But then I looked down at the page, and saw that I had only written eight measly lines. As a playwright, I constantly ask actors to memorize entire pages of dialogue at a time, sometimes with monologues that stretch five or six minutes. And I was going to pass on eight lines?

I set to work memorizing, thinking through each turn of phrase, each comma and question mark. As we commented on the other scenes (I was listening, I swear), I snuck in a close peek at a line or two. I was determined.

Finally, come my turn, I read aloud. I spoke clearly, looking in the direction of the page without being able to see a single word. People listened. People laughed. People applauded. Ladies and gentlemen, there was joy in Mudville, for mighty Caisy had, um... OK, fine, no great accomplishment... but it was a good feeling.

I still hate acting, though. Not when other people do it; just me. It's like stepping into an empty fish bowl and trying to pretend you're in your living room.

Mac-cessibility

2008-11-06T12:21:00.000-08:00

I stopped into the Apple store today. On a rainy day, there's no better toy store for grown-up boys like me. It's so easy to cause mischief.

There are all kinds of games you can play. They had LEGO Star Wars II set up at one computer, but I couldn't figure out how to get out of the stupid bar. So instead, I played my own favorite game: screwing up the computers on display.

It's easy to do. All you have to do is zoom in, by holding down the Control key and rolling the little scroll ball on the mouse. It zooms in on the pointer. And the best part is, THERE'S NO WAY TO GET IT BACK TO NORMAL. In theory, you're supposed to be able to roll the ball backwards and zoom out that way, but I have yet to meet a Mac mouse that allows you to do that without several minutes of trial and error. What a brilliant feature.

The Mac has always been ridiculously visual. As the supposedly creative type, I should love Macs -- and I do like the idea of an operating system designed for human beings -- but it's virtually impossible for me to use. Even when the zoom thing works, I can't figure out how to make it more like a magnifying glass, where the rest of the screen stays the same and only a spot gets bigger. At least I have a program for that on my PC.

The iPod has the same problem, of course. With displays that small, I'm surprised anyone can see those things -- and how exactly do you type on an iPhone? Did everyone's fingers suddenly turn into toothpicks?

Lucky for me, the cheapest thing Apple makes is the Shuffle: the iPod that doesn't require you to see anything at all. Of course, if I were completely blind, I'm not sure how I'd get my podcasts onto the Shuffle in the first place... but that's for somebody else to worry about.

And now, back to This American Life.

That One

2008-11-02T21:14:00.000-08:00

I went to a theater event on Halloween, and I wore this:

Truth be told, I've been wearing it every day since I got it. But that's besides the point.

After the show, I went over to talk to one of the producers, a friend I haven't seen since Hillary and Obama were duking it out. At the time, he was an ardent Hillary supporter. Now, as it turns out, he's pushing for McCain. He's the only New Yorker I know who's even considering voting for McCain. I think he's just trying to get a rise out of people.

As I came over, he introduced me to the British actor he was speaking to.

"This is Jeremy," he began. "He's mostly blind. Jeremy, I don't know if you realize this, but that shirt you're wearing isn't a McCain shirt."

I figure I may as well respond to one lame attempt at humor with another: "You know, I don't think I'm the only one operating with a blind spot here."

His British friend asked if he really, honestly, was voting for the crazy old man, and my friend drunkenly responded that at least Palin has experience as a governor. What qualifications does this Obama guy have.

"You're right," I said while smiling and nodding. "He's completely unqualified to be president. No qualifications whatsoever."

Then the British guy's attractive girlfriend joined us and remarked that she really wanted a shirt like mine.

Way Cooler Than I Am

2008-10-31T15:52:00.001-07:00

Way Cooler Than I Am

2008-10-31T15:46:00.001-07:00

She doesn't have STargardt's (my vision impairment of choice), but it sounds like she has some similar eye issues. I have never attempted dog-sledding. I do like dogs, though.

So, yeah... this video seems a bit more informative than the commercial that's been airing.

Ask a Blind Guy, Part 3

2008-10-29T13:56:00.000-07:00

It's a REAL QUESTION. Hooray! Feel free to add more: notnotblind@hotmail.com (or just leave a comment).

Q: "...I'd even be curious as to how you can see to type this blog, or correct its typo's."

A: First off, I apologize. This was a comment from exactly a month ago, but I didn't see it. Seriously. I just figured out how to quickly check for comments, and I'll be doing that more often from now on.

I do a lot of typing, and most of it is by feel. Not to say that I can't read the letters on the keyboard -- I can -- but I have to lean in very close, and that would be bad for my beck, back, and dignity. Besides, I'm too busy leaning in to see the screen. I also never really learned to touch-type the way you're supposed to... so instead, I just do a lot of hunting and pecking for keys. I use the keyboard enough that I don't really have to look anymore. OK, once in a while I forget where exactly the "b" key is, but doesn't everybody?

As for typos, I have a few different ways to check.

1) I have a great, fairly inexpensive program called ReadPlease that can read anything on my screen aloud. What's more, the voice is pretty good. I listen at what most friends describe as an insanely fast speed, where I can understand the voice but others usually can't. This took years of practice, listening to sped-up books on tape from Recordings for the Blind. I still can't understand auctioneers, though.

2) I have another great little program called Screen Beagle that turns the mouse pointer into a magnifying glass. It's pretty ideal for looking at punctuation and checking small type.

3) I have a 19" screen, and I can make fonts as big or small as I want to with Firefox.

4) Spell-check.

5) I'm fairly careful. That said, I miss stuff from time to time; did anyone catch my typo from the last post? I've fixed it since then, but when somebody says, "Let's talking about this thing," doesn't that sound a little German-gone-wrong?

Anyway, hope that answers your question. Thanks for sending it in!

By the way, somebody else commented on my last post that this was coming out in WingDings. Does anyone know why that might happen? And if you're reading this, I assume you're reading it in English, and not in fake hieroglyphics.

Blind Ambition

2008-10-27T14:45:00.000-07:00

It's a funny phrase, isn't it? There are a bunch of them; I'll probably dig into "blind justice" some other time. But let's talk about blind ambition.

If ambition were actually blind, it wouldn't be very good at living out its purpose. The blind tend to be somewhat cautious about how they move around. Even those of us with relatively unimpaired mobility have to feel around once in a while to see what's there. I rarely walk down a set of stairs, even the stairs outside my apartment building, without taking little stutter-steps with my feet to figure out the exact length and depth of each step. (I don't think about inches or centimeters... more like "shallow" or "steep.") And, while it's fun to go for a run once in a while, we're not likely to barge into unknown territory without some form of company or preparation.

Don't get me wrong: there are plenty of ambitious blind and partly blind people, and I've met a few. Considering how unconventional my career path has been, it's not too much of a stretch to call me one of those. But ambition, itself, is rarely blind. It might channel out what it doesn't want to see, but you can't blame your eyes for that

Yes, I'm Talking to You

2008-10-22T19:23:00.000-07:00

I'm often surprised at how difficult it can be to order a sandwich.

The best place to get lunch is at a deli. In New York, you can find one of these by walking to the corner and looking around. Quality and price varies, but the usual selection (turkey, ham, roast beef, cheese) will usually be the same everywhere. You don't have to read a menu -- a good thing, in my case -- because you know what they have before you walk in.

Sometimes, I order with no problem at all. The deli worker says, "Next," and I say what I want. They make the sandwich and hand it to me. Done.

Sometimes, it's not so simple. They say, "Next," and I start talking.

"Could I get turkey and Swiss on a roll, with..." I begin. This is about the time I notice that the deli server is not paying attention to me. He's looking off into the ceiling, probably fascinated by the number of tiles. "Hi," I say.

"Yes?" he responds, as if he hadn't noticed I was talking to him.

The problem is that I usually don't make eye contact. I can force it and get pretty close, but if I'm not thinking about it, I'll look off to the side of the head. This signals to some people that I'm not talking to them at all. I get that: fully sighted people are programmed from birth to only react to those who look them in the eye. It prevents them from answering questions that weren't directed at them. And, hey, that's a horrible thing. Wars have started, governments have been overturned, because somebody dared to answer an otherwise directed question.

Seriously, I can understand why this happens when there are a bunch of people behind the counter. Nobody knows who I'm talking to, so they just assume it's the other guy. But when it's one person, alone, it's a little odd, isn't it? Why wouldn't you expect the next person on line to address you? Doesn't "next" mean "next"? If I'm not ordering a sandwich from you, why am I listing ingredients into space? Do I like to practice my order out loud before giving you my final answer? Is this Who Wants to Be a Sandwich-Eater?

"Yes, Regis... My final answer is tuna on wheat with tomato."

I don't doubt that working at a New York deli counter is a grueling, unforgiving job with little or no appreciation. It's not a conspiracy of deli workers against the legally blind. It's indicative, though. People have all kinds of weird associations with eye contact. Most of them are instinctual and/or subconscious, and very few of them make sense. At least, they don't make sense to me. Do they make sense to you?

More to the point, do you have any associations with a lack of eye contact? No? Seriously? Come on; look me in the eye, and tell me you ... Oh. Well, there you go.

A Word from Our SPonsor (Me)

2008-10-21T12:17:00.000-07:00

OK, I've committed this blog to be about the experiences/quirks of being somewhat blind. That said, I'm also a playwright, and I need all the free advertising I can get. SO here's my own little promo for an upcoming event, a reading of a comedy I wrote this summer. Please come -- it should be a lot of fun -- and I promise to get back to real posts about real not-not-blindness in the real America tomorrow.

My friends,

Please join me on Monday, November 3rd, for a unique opportunity to relax and laugh before what promises to be an exhausting Election Day.

Between a terrific director and about a dozen of the most patriotic actors we know, we will be presenting a staged reading of my latest comedy, Calling CQ. It’s a political satire that has gotten rave reviews from workshop sessions at Flux Theatre Ensemble and a production this summer at Appel Farm Arts & Music Center. The play poses the crucial question, “What if the president believed that the greatest threat to the American people was the impending invasion from Mars… and what if his administration decided to prove him right?”

It’s like Christmas Eve, except instead of opening that first present, you get to laugh at politicians, reporters, and ourselves (and drink some wine). I can’t promise you lower taxes, but I can promise a fun night of theater.

A staged reading of
CALLING CQ
a satire by Jeremy Basescu
directed by Heidi Handelsman

Monday, November 3rd @ 7:45 pm
Running time: 75 minutes
Admission: FREE (but please RSVP)

Arthur Seelen Theatre
Drama Book Shop
250 West 40th Street
between 7th and 8th Avenues

seating is limited
RSVP to CQrsvp@gmail.com

My friends, you won’t want to miss it. Be a maverick and skip out on all the cable news blabbering for one night, and come share Election Eve with us.

Eye On the Ball

2008-10-20T14:37:00.000-07:00

Last night, I was at a theater event at a bar. The Rays/Red Sox playoff game was on. I couldn't have helped it if my attention wandered to the screen every time there was a cheer or deep-voiced "Yeah!" Of course, I couldn't tell exactly what was happening on the screen... but that's what chatty, slightly drunk company is for.

I grew up watching baseball. My grandfather was a Yankee fan before they had started winning championships, and I like to toss that pedigree out to assure people that my family jumped on the bandwagon before they had paved the road. As a kid, I went to games once in a while and rooted for the team, but my obsession with the Yankees (and, by extension, all things sports) began when I was twelve. This happened to coincide with my blindness fully setting in, so that reading books had gone from unusually easy to frustratingly difficult at best. Luckily, I had a couple of commentators/ on the radio keep me entertained.

I look at Sterling and Kay, the play-by-play team at the time, as my gateway drug to sports radio. From their surprisingly erudite conversations as they described the games, I found myself hungry for more and more discussion of sports. I lived and died by the outcomes of Yankee games, and I simultaneously became a repository for all knowledge of baseball, football, basketball, and hockey that I could acquire. I found something to talk about at lunch with my friends in high school. I also developed some fascinating superstitions about my activities during the day, and how they might affect the Yankees' chances in the playoffs. October would routinely see my sleep decline.

I'm happy to say that I no longer ride that particular roller coaster. The Series of , when the Yankees had a few post-9/11 dramatic victories before ultimately losing, gave me a pretty good cap to ten years of baseball fanaticism. I do still love to go to games, where I depend on the radio to tell me what the heck is going on. (The ball looks pretty small from the upper deck.) As a teenager, I would spend my entire night at the ballpark glued to my Walkman, not wanting to miss a single moment of (generally useless) commentary. Now, as a "grown-up," sometimes I have the radio off during the game. Being at the park with friends or family, and experiencing the atmosphere of the stadium, now outranks actually knowing where the ball is.

And now, if you'll excuse me, I'm going to take off my cap, place it over my heart, and have a moment of silence for Yankee Stadium. No one needed 20/20 vision to see the beauty of that place.

Radio Everywhere

2008-10-18T14:12:00.000-07:00

During college and for years after, I was one of the only people I knew who listened to National Public Radio.

Sure, a few professors and older family members were regular listeners, but I rarely met anyone my own age. While everyone else was getting their news from CNN, the New York Times, and the networks, I was getting my twice-daily doses from Morning Edition and All things Considered. I'd like to think I was better informed.

Now, it's important to note that blind and not-not-blind people are not the only ones who listen to the radio. People who drive cars, for instance, like to have chatter on in the background, and sometimes they even pay attention to it. Much more interesting than those exit and speed limit signs .) But as far as the primary news source goes, radio is ideal for people like me, and less ideal for those who need visual stimulation. The fully sighted seem more inclined to tune in for generic pop music, sports, and infuriating extremists with microphones. At least, that used to be the case.

In the last two years, the iPod has changed all that: specifically, the podcast has revolutionized the way people get their information. NPR podcasts have consistently been at or near the top of the podcast list. Why? Because they're really good at making stuff for the naked ear, and they produce fresh, often funny material that tells stories and stimulates the intellect. And unlike PBS, they're not afraid to go beyond the bare facts and take a position now and then.

It's been a relief to be able to talk about This American Life, On the Media, and Wait Wait Don't Tell Me with people who aren't directly related to me. What's more, NPR has seen its ratings soar, surpassing Rush Limbaugh last year. Call me a communist, but I feel better living in a country that gets more of its news from an outlet that actually believes in journalism a doesn't seek a profit. There's plenty of talk about a strong liberal bias, but I challenge anyone to provide real evidence of that. There have been harsh criticisms of the Bush administration, but those seem to have been accurate.

If you're wondering, I'm fully aware that people still get their news from other sources. TV is still pretty big, and lots of people go online to read newspapers, magazines, and, um, blogs. But it's nice to think that serious radio journalism has made a comeback... even if it isn't over the radio.

Ask a Blind Guy, Part 2

2008-10-16T19:50:00.000-07:00

Q: Do you bump into things?

A: No.

Peripheral vision -- and mine is better than most -- is great for avoiding stuff. I often come close to running into people on crowded sidewalks, but I'm pretty sure that's a condition of being a New Yorker, and I never actually do make contact. If something or someone comes up along my side, I usually get an "collision alert" warning in my brain, and I duck/dodge/stutter-step. I bump my head far more than I'd like to, but I can chalk that up to being 6' 2". Low ceilings above toilets should be illegal.

If you want me to answer any actual questions from actual people, please keep in mind that YOU are an actual person. Send your blind-guy queries to notnotblind@hotmail.com. I won't publish your name, but I will publish your soul. (I asked a copyright lawyer, and he said it would be cool..)

Later, y'all.

A Blind Spot for Headlines

2008-10-14T18:31:00.000-07:00

Sometimes it's handy to have a blind spot.

I can't imagine how fully-sighted people do it. Whether you're watching CNBC, MSNBC, CNN, or (*dare I say it) Fox News, there's no end to the visual information. Clocks, news tickers, stock tickers, ticker tickers (just wait, they're coming), local temperatures and sports scores... How can you pay attention to any of it? Not that the talking heads at the top of the screen have anything worthwhile to say.

My roommate and I sometimes play the "How Much of This is News?" game when he puts on an "all-news" channel. Between the previews for upcoming stories, the recaps of previous stories, the commercials, the celebrity gossip, the pointless alerts, and the promos for specials, it's usually about 10% news. The percentage drops with the on-screen appearance of Lou Dobbs.

Still, I'm thankful that I only have to put up with the main-event crap: the talking head. I can't read any of the other stuff on screen, except when they put some giant word on the screen like "WAR," "TAXES," or "IKE" (which confused me until I realized that they weren't talking about the late President Eisenhower). I am thrilled to live in a world without a constant running headline. I love my ticker-less existence. I wish you all could join me.

Ask the Blind Guy, Part 1

2008-10-12T18:39:00.000-07:00

Q: What does it look like?

A: Huh? What does what look like?

Q: You know... stuff.

A: Oh, right. Stuff. Well, for the most part, stuff looks normal to me. The world doesn't look fuzzy or out of focus, so it's not at all like taking off your glasses. Everything looks clear except for a blind spot in the middle of my vision, no matter which eye is open.

Now, if you're wondering what the spot looks like, it's actually pretty easy to simulate. Just look directly at a bright light for a few seconds -- I would suggest you avoid the sun, and so would your mother -- and then look away. The after-effect you see, that shiny spot that doesn't exactly have a shape, is a lot like my blind spot.

A lot of people react to this by remarking that it must be annoying to have a slightly-glowing spot in front of me all the time. If it happened one day, out of the blue, I'm sure it would be pretty frustrating; but lucky for me, it just slowly dawned on me that it was there. The weird thing for me, at this point, would be for it to disappear... or if it started talking to me in rhyme. That would be just plain crazy. I promise I'll post about it if that happens.

If you have any blind guy questions, send them straight to our brand new email address, notnotblind@hotmail.com. First one to send us an email gets a free ice cream cone.**

**Offer not valid within the 48 contiguous states, Alaska, Hawaii, Canada, the United Kingdom, or anywhere else on the Planet Earth. However, if you can read this print, you can see better than I can... so go ahead and treat yourself to some delicious ice cream. I'm about to do that myself.

Jaywalking

2008-10-09T09:12:00.000-07:00

As a New Yorker, I often assert my God-given right to jaywalk. Pedestrian traffic lights aren't the boss of me, nor do they seem to affect most of my fellow city dwellers. We walk when we want to, oncoming automobiles be damned.

Of course, as a less talented perceiver of objects than some, I tend to be a little more cautious than most. Back in high school, I took a step past the sidewalk just in time to have an eighteen-wheel truck brush past my nose at 40 mph. Ever since then, I've taken a few extra looks before crossing the street. True, my ability to pick up moving objects is pretty good, but not when they're coming right at me. Better safe than two-dimensional.

The fully-sighted community, on the other hand, throws caution to the wind: a wind created by the cars that barely miss them. I can't tell you how many times I've almost followed someone into the street, only to see them stop just short of an oncoming vehicle's path. And then there are the people who try to push past me so they can walk into a sea of moving traffic. Ah, the sound of honking horns and angry curses.

Still, I do love the rebellious nature of the New York walker, and I try to emulate it, asserting my status as a native New Yorker, within the bounds of sanity. And if they really meant for those signs to be the law, they would have kept them as "walk/don't walk" instead of the picture of a hand (stop) versus a men's room sign (go).

We All Look ALike, Part 2

2008-10-07T07:41:00.000-07:00

UPDATE: Governor Paterson has decided to run for re-election (or, really, for election) in 2010. I haven't looked at his new campaign website yet, but I'll have more to say about it soon. If you read it and have any comments, please send them along.

This spring, a friend of mine excitedly approached me with news. He had seen footage of the governor signing a bill, and his immediate thought was, "He looks just like Jeremy!"

Now, it's true that New York Governor David A. Paterson and I are both legally blind. And I'm pretty sure I do look like this when I sign stuff:

(image from the Albany Times Union)

Still, I'm pretty sure I don't put my head that close. Governor Paterson's vision is considerably worse than mine; he's completely blind in one eye, and the other eye is much more impaired than either of mine. Also, as far as looking like me goes... well, maybe we're at that point of racial equality where Caucasians and African-Americans can be mistaken for each other. I'll be more convinced if Obama wins.

I am definitely thrilled to have a legally blind governor, and one who consistently speaks up fro the rights of the disabled. No other politicians speaks as eloquently or as often about unemployment among the blind and deaf, and no one sets a better example of how someone with an unmistakable difference from "normal" can still succeed.

Granted, he didn't take the traditional path to the governorship -- we have Eliot Spitzer to thank for that -- but I'm still proud. He's also been a leader for fiscal responsibility in the state, which has been sorely lacking... and with the current crisis underway, it's probably a good thing that he convinced the legislators to cut spending.

The best part for me is that now I can legitimately claim to see better than the governor of New York State.

Minority Report

2008-10-05T09:57:00.000-07:00

I once overheard a couple of actors arguing about which received more prejudice, being Asian or being gay. This was in the late 90's, a particularly dark time for Asian actors. After a "worldwide search," the white Jonathan Pryce had recently been cast as the Asian leading role in Miss Saigon. Thankfully, he did not play Miss Saigon.

The Asian actor talked about all the stereotypes that he had to overcome, and the fact that he could not hide his ethnicity (nor did he want to, of course) when auditioning for roles that were envisioned for white actors. The gay actor argued that the prejudice against the queer community was much more toxic, and that he felt the need to hide his orientation when auditioning for commercial roles. He also brought up the point that Asian people are usually born to Asian families, whereas a gay man is often shunned by his own family.

It can be tricky to have an identity your family doesn't share. I imagine many adopted people go through this, especially when their parents are a different race than they are. As far as us blind and blind-ish people go, we tend to be born into fully sighted families who don't have any idea what the world looks like through our eyes. There's no comparison to racism or homophobia -- people don't hate the partially sighted, as far as I know -- but there are a few parallels. It's hard enough to explain your sight to a friend or colleague, but it almost feels alien to explain your physiology to your parents.

My mother and I have gotten into pretty big arguments about this -- in fact, we had one just last night -- and I probably have unrealistic expectations about how much she can know (or remember) about what I can and can't see. She's certainly sensitive to it, but she forgets about certain limitations, like my basic inability to recognize a face from a photograph (usually). That's not her fault, but it's inevitably frustrating for me. If I end up with a family of my own someday, it will probably be a source of frustration then, too, for all of us. Hopefully, it will be a source of humor as well.

I don't think the gay actor and the Asian actor settled their differences., but the tempers cooled by the time the show started. It's a good thing, too; there's no room for prejudice in Shakespeare. Now, tell me again what happens in The Merchant of Venice?

Markers are Magic

2008-10-02T15:14:00.000-07:00

I'm starting to notice a pattern.

This week, I'm being trained for a teaching job. I may or may not get the job, but it probably won't have anything to do with my eyes. Still, they aren't making it any easier for those of us who, uh, can't read stuff.

On the first morning of training, they asked us to take magic markers and answer some open questions on big pieces of paper. After we sat down and introduced ourselves -- I didn't have the chance to mention the blind thing to the group -- they asked us to come up to the paper and read what everyone else had written, to write down our impressions. Being that I couldn't really read any of it, I didn't write anything down.

Next, we found a single green sheet on each of our seats. This was a one-page, five thick paragraphs, single-spaced essay. We had about three minutes to read and respond to it, and to compare its contents to those of the big pieces of paper. I wrote that what the two things had in common were that I couldn't read them. I didn't hand that in.

After an all-morning lesson in the elements of photography, I was starting to think they had something against me. Luckily, I muddled my way through and even had some relevant things to say, so it wasn't complete hell. Of course, when the teacher asked me to elaborate on my observations about the 4x6 photograph across the room, I said, "No, I'm blind." Then we went back to writing on big pieces of paper with magic marker.

Apparently, lots of job training and professional development sessions use the magic-marker-on-big-paper thing. My friends at the camp do it too; luckily, they know to tell me what's up there. It certainly is fun to play with markers -- I'm always tempted to doodle -- but haven't we evolved past that? What about collage? Spray-paint, anyone?

Shining Stargardt's

2008-09-30T10:35:00.000-07:00

Q: So, What exactly is wrong with your eyes?

A: First of all, I like to think of myself as "differently sighted." (JK, LOL.)

I have what's commonly known as Stargardt's Disease. Okay, maybe not "commonly known," since barely anyone has ever heard of it... but there are other names, and that one happens to be easy to say (if not spell).

I wanted to link to the Wikipedia page to explain it, but it's not very helpful. SO here's how it's been explained to me:

If the eye were a camera (a traditional camera, not one of those stupid digital things), the retina would be the film. Light bounces off an object and travels through the rest of the eye to hit the retina to make the image.

The macula is the center of the retina, and it deals with everything in your central vision, including the most accurate stuff that you use to identify words, faces, and random twisted metal on the side of the road. While you use your peripheral (outer) vision to perceive a moving object coming from the side, you use the central vision to identify things.

SOme of us are lucky enough to have "macular degeneration," where the macula -- clearing house for all that useful central vision -- gets eaten away. Most people with macular degeneration get it when they're older, and the onset is pretty fast. In my case, Stargardt's, it happens before the age of 20 -- or, in my case, before the age of 10 -- and sticks around for the rest of your life.

One advantage of STargardt's, as opposed to the older and more common kind, is that the damage is often pretty limited. In my case, I just have a small blind spot. I've met other people with the same condition, and it seems to affect everyone a little differently; mine stopped its progress when I was about 12, and some people get progressively worse. So, actually, I'm pretty lucky.

At the moment, there's no treatment, and I don't really expect one. Most of us Sytargardt's people do pretty well; we're reasonably successful, often a little bookish (ironic, because we can't really read much), and unusually friendly. There doesn't seem to be any great urgency to find a cure, and I'll probably be OK as is for the next several decades Still, the thought does cross my mind of what it would be like to have normal sight. Now, what exactly does that mean, again?

We All Look Alike, Part 1

2008-09-29T07:40:00.000-07:00

Last week, at a theater workshop, I complimented an actor for doing a great job in a scene. He stared at me for a moment, then said, "I know you."

The actor insisted that he had worked with me before. I agreed, we had both been at the workshop in the spring, but he remembered playing a part for me in a reading. He said the name of the director -- I didn't recognize it -- and recalled that it had happened ten years ago. I was a little embarrassed to admit that I would have been in high school at the time. Instead, I said that we would figure it out.

Yesterday, I pressed him on the matter, and I asked him the name of the director again. When I said that I didn't know the name, he thought for a moment, and then started to question himself. The playwright had been blind... and apparently, I looked just like him.

It never ceases to amaze me how often that kind of thing happens. There's always the temptation to say, "Hey, I'm the blind guy: I'm supposed to mix people up." But there are reasons for it, and I'll get into those in future stories of mistaken identity.

Why "not not"

2008-09-28T17:46:00.000-07:00

I think I should start by explaining the title of this blog.

I was spending my second summer working in a camp in New Jersey when a fellow counselor admitted something to me. She and I had been neighbors the year before, and she had assumed, because I never made eye contact with her, that I thought she was ugly. I did not think she was ugly. In fact, I had often thought about how not ugly she was. But I understand what happened.

Thanks to a small blind spot, right in the middle of both eyes, I tend to look just to the right of people (or, from their perspective, the left) to see their faces at all. Even then, I can't see faces too well until I'm about eight or nine inches away. That can be uncomfortably close in American culture, unless you're dating.

So, it began to dawn on me that my beautiful counselor colleague probably wasn't the only one. Plenty of people mistake my lack of eye contact for rudeness, obliviousness, disgust, or just plain quirk. I probably possess all of those attributes, but not as often as it might appear. That's why I decided to take action.

The next summer, when we went around introducing ourselves, I proclaimed:

"My name is Jeremy, I'm from New York City, I teach theater, and I'm not blind, but I'm not not blind."

Since then, that's how I've introduced myself. People get the idea pretty quickly, and it also leads to questions. For instance:

How did I get this way?
Have I always been like this?
Can I read? What can I see?
What does it look like?
Does being blind give you super-powers?

I'll be answering some of those in this blog (hint: if I gave away my super powers on the web, my enemies would come after me), but I'll also have some commentary about life and stuff that comes from my not-nearly-20/20 perspective.

Also, if you have any vision issues (or if you know someone who does), I would love to have other people post stuff here. Even if no one else reads this thing, I will. I'm fascinated by what I have to say (ahem).

And on we blindly stumble.