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.
Sunday, December 28, 2008
Tuesday, December 23, 2008
Behind the Mask
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.
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.
Saturday, December 20, 2008
Ask a Blind Guy, Part 4
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.
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.
Thursday, December 18, 2008
Responses
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.
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.
Tuesday, December 16, 2008
Live From New York, It's Deeply Offensive
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.
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.
Tuesday, December 9, 2008
Fumbling Through the Mailbox
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.
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.
Sunday, December 7, 2008
Poll Results
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.)
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.)
Thursday, December 4, 2008
Point of Focus
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.
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.
Tuesday, December 2, 2008
Open Shuttle
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.
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.
Sunday, November 30, 2008
Poll!!!
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.
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.
Friday, November 28, 2008
Another Sappy Gratitude Post
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.
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.
Tuesday, November 25, 2008
Deli-cious
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.
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.
Saturday, November 22, 2008
Trapped in the Music
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.
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.
Tuesday, November 11, 2008
Wild Blue Yonder
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.
Sunday, November 9, 2008
Read, Memorize, Eat
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.
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.
Thursday, November 6, 2008
Mac-cessibility
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.
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.
Sunday, November 2, 2008
That One
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.
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.
Friday, October 31, 2008
Way Cooler Than I Am
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.
So, yeah... this video seems a bit more informative than the commercial that's been airing.
Wednesday, October 29, 2008
Ask a Blind Guy, Part 3
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.
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.
Monday, October 27, 2008
Blind Ambition
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
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
Wednesday, October 22, 2008
Yes, I'm Talking to You
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.
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.
Tuesday, October 21, 2008
A Word from Our SPonsor (Me)
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.
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.
Monday, October 20, 2008
Eye On the Ball
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.
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.
Saturday, October 18, 2008
Radio Everywhere
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.
Thursday, October 16, 2008
Ask a Blind Guy, Part 2
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: 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.
Tuesday, October 14, 2008
A Blind Spot for Headlines
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.
Sunday, October 12, 2008
Ask the Blind Guy, Part 1
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.
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.
Thursday, October 9, 2008
Jaywalking
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).
Tuesday, October 7, 2008
We All Look ALike, Part 2
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.
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.
Sunday, October 5, 2008
Minority Report
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?
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?
Thursday, October 2, 2008
Markers are Magic
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?
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?
Tuesday, September 30, 2008
Shining Stargardt's
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?
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?
Monday, September 29, 2008
We All Look Alike, Part 1
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.
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.
Sunday, September 28, 2008
Why "not not"
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:
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.
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.
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