Independence day

Last summer, Jamie, Janet and I were hanging out in this New York apartment we’ve managed to split with a few friends. We got a call from Jamie’s cousin Trevor, who lives on the Upper West Side, at 102nd Street and West End Avenue; Trevor proposed to visit us and hang out with Jamie for the day. And he told us that he’d take the subway by himself and walk from 59th and Lexington (we were on 62nd Street and 1st Avenue). When Jamie heard that, he turned to me in astonishment, saying “Trevor will take the subway by himself–and he has disability!”





Trevor, you see, was born just under 18 years ago, three months premature (gestational age, 24 weeks). He spent weeks in the NICU, as did his twin brother Dash, who was tragically mismedicated during his stay and is now on the “severe and profound” end of the scale of human variation. Trevor, by contrast, has some mild cerebral palsy and probably resides somewhere on the autism spectrum; it has taken him a long time to learn how to be a reasonably social being, and he sometimes has an odd affect because he has trouble with social cues, but he’s gradually become a bright, sweet, and deeply reflective kid. A kid with disability who can get around by himself–on the New York subways, on intercity buses, and on Amtrak. (Though he did get lost after emerging from the subway that day, and had to call us on his cell phone and ask us to meet him. Then again, he was capable of realizing that he was lost, and capable of calling us on his cell, so that was reassuring.)

Well, that day a little light bulb went on for Jamie. It was visible at the time, I assure you, but we didn’t get official notice of his epiphany until a few days later, when we all went to a picnic in Central Park for families of kids with Down syndrome. The picnic was held in Heckscher Playground in the southwest corner of the park, and I spent much of my time following Jamie around the various structures, making sure to keep him in my line of sight at all times. Rachel Adams, who teaches at Columbia and has a young son with Down syndrome (Henry, then three), told me that it was a little depressing watching me hover over Jamie, because it suggested to her that she would be doing the same thing with Henry fifteen or twenty years from now. I told Rachel that for as long as I have visited New York with Jamie, eleven years now (ever since we moved to Penn State), I have been terrified by the thought that he would dart into a subway train just as the doors closed … and when Jamie was younger, pretty much at any point between the ages of 5 and 15, that was an entirely plausible scenario. Jamie has gotten away from us three times, each one of them terrifying, the last time in a mall in 2003 for the longest ten minutes of my life. “Oh, yes, I have that subway-darting fear about both my kids,” Rachel replied. “As well you should,” I said, “but with Jamie I only stopped having that fear a few years ago, when he became capable of understanding that if such a thing ever happened he should simply get off at the next stop and wait for me.”

With impeccable timing, Jamie took a break from playing and cavorting and eating just then. He approached me and Janet and asked, “can I live independently?” Janet was puzzled at first, since the question did sound a bit abstract and general, but I thought I knew exactly what he meant. “Are you asking about taking the subway by yourself?” I said. “Yes,” Jamie replied. “I can visit my cousin….” And he held it just like that, with an ellipsis rather than a period or a question mark: you know, I could always go visit my cousin….

I thought for a moment. No, that’s not true–I thought for maybe one-third of a moment. “No, I’m sorry, Jamie,” I said, “you cannot take the subway by yourself.”

_______

Deep breath.

Those of you who know New York will know that the trip from the southwest corner of Central Park to 102nd and West End is a very simple one: you get on the 1 train at Columbus Circle and you get off at 103rd Street. No transfers. Jamie is certainly capable of managing that much; in fact, thanks partly to his own remarkable internal-GPS intelligence and partly to his father’s decade-long program of making him more familiar with New York, Jamie is now capable of saying (as he did at one point last year) “to go to Madison Square Garden we need to take the N, R, or Q and change at Times Square for the 1, 2, or 3.” (Yes!) However, some of those transfers are exceptionally difficult to navigate; New York’s subways are actually made up of three different systems, and historically, not all of them have played nicely with each other. This is not a problem for me: I grew up knowing all kinds of details about various stations, many of which still come in handy today, whenever it becomes useful to know that if you ride in the back cars of the downtown N, R, or Q you can get off at Union Square and actually come out on 16th Street. (This kind of information can be especially critical in winter, when you want to minimize your time above ground. Feel free to ask me for handy traveling tips in comments!) But most people find the system pretty bewildering at first go.

And as I told Jamie a couple of days later (when he asked me again why I didn’t allow him to travel by himself), the subway itself is only one problem. “I know you would pay attention to the signs,” I said. “I know you would go uptown instead of downtown, and I know you would get off the 1 train at at 103rd Street.” Jamie nodded emphatically. “But sweetie … you have no idea how to get from the station to 102nd and West End Avenue. You would not know whether to turn right or left off Broadway, because you don’t know yet that West End is just west of Broadway, and you wouldn’t know where ‘west’ was when you came up the subway stairs.” “True,” Jamie admitted soberly. “And so,” I continued, “that is why I didn’t let you travel by yourself to Trevor’s. You still have to learn about the streets in Manhattan and how to get around after you get out of the subway.”

So there is the surface-streets problem … and then there is the psychopath problem. As fate would have it, Jamie made his request the same week that 8-year-old Leiby Kletzky was abducted and murdered in a quiet Hasidic neighborhood in Brooklyn while walking home from his summer day camp. He had asked his parents about … well, about living independently, and they had agreed, doing a practice run with him beforehand. But on his first trip home by himself, he got lost, and asked a man named Levi Aron for help. Levi Aron did not help.

Jamie likes to greet people. He says hello to strangers all the time, and he is especially gregarious when I take him with me to campuses or conferences. At the American Studies Association conference in San Antonio a few years ago, he made a habit of telling everyone in the elevator–on every single elevator ride–that his father was the Director of the Institute for the Arts and Humanities at Penn State. “You have to stop doing that,” I told him. “Why?” he asked slyly, with an expression full of charm and mischief. “Because there are people here who really do go around introducing themselves to people that way, that’s why.” Not that I would expect Jamie to care about such things. “You can just say hello and leave it at that.”

So instead of letting him take the subway by himself, Janet and I decided to take a baby-steps approach: we would give him five bucks and let him go down to the fruit stand below our apartment, the Space Market, to buy Orangina or beef jerky or bagels and chocolate milk. Janet gave him strict instructions: no talking to strangers. Get your change. Come right back home.

(And yes, the first time he went to the Space Market by himself, I waited thirty seconds and then tailed him. As he paid for his merchandise and turned to leave the store, I ducked behind the oranges. He did not see me.)

These days, Jamie is totally comfortable with buying himself stuff from the Space Market, and his parents are too. And now that his father has finally figured out how to manage his Supplemental Security Income (SSI) payments and has gotten him a fully functioning debit card, Jamie is able to buy himself stuff pretty much whenever he wants to. So this year, Jamie asked if he could go to the Food Emporium by himself, three long blocks away at 59th Street, under the Queensboro Bridge.

I told him he could go to the Food Emporium if I followed one block behind him–just to keep an eye on him, not to interfere. We have yet to put this plan into action. It seemed too ambitious … but then, this past July, events overtook us.

The weekend of July 14-15 was complicated. Janet was attending a friend’s funeral, and I was attending (of all things) a reunion of my sixth-grade class from PS 32 in Queens. (I have never attended a reunion of anything before–high school, college, Alexander Cockburn Appreciation Society–nothing. This one turned out to be great fun, despite or because of the fact that sixth grade was unbearable from start to finish. And I made a friend! “Everyone is so awkward at that age,” she said. “Everything is always somehow about you. Or, in my case, me.”) And Jamie? Jamie was with Trevor. On Thursday night, the 12th, they texted us a lovely picture of themselves in the bleachers at Yankee Stadium. “How nice,” I thought. “Bud [Trevor’s father, Janet’s brother] took the boys to a game and took a picture of them in the stands.” But I was wrong. Bud did not take the boys to Yankee Stadium. They took themselves to Yankee Stadium, and took a picture of themselves in the stands. And when they got back from the game, around 11 pm, they took themselves out for sushi. Then, on Saturday, as the Lyon clan made their way to the funeral according to a plan only slightly more complex than the invasion of Normandy, I learned that part of their plan involved Jamie and Trevor taking the subway by themselves from Trevor’s apartment to Grand Central Station, thence to New Haven via MetroNorth. “Holy fuggin shit almighty,” I said, obviously quoting the great Leo Durocher line from Don DeLillo’s Underworld.

Well, the adventure took a bit longer than I would have liked–I didn’t get confirmation of their arrival in Connecticut until 7 or 8 that evening–but it was historic. So, to sum up: Jamie and Trevor got themselves to Yankee Stadium, they took themselves out for a late-night snack, and then they proceeded to navigate two transportation systems in the sprawling NYC metro area with style and grace and savoir faire. And just like that, Jamie began to live a little more independently.

Today Jamie turns 21. Here he is at Tal Bagels at 54th and 1st, hanging with me and Shachar Shimonovich, having a bagel and chocolate milk:

My heart, it bursts. And yet, somehow, it keeps beating. A great ox stands upon my tongue, and yet, somehow, I keep talking.

And with that, dear friends and assorted enemies in a healthy 9:1 ratio, I am signing off the blogotubes again. I have been a most desultory poster at CT in recent years, as you know, though I will always be grateful to Henry and Company for extending me an invitation to join the crew back in 2007. It has been great fun, even when it hasn’t been great fun … which is to say, less facetiously, I think that Crooked Timber has consistently been one of the best blogs in the history of the world, and I know that it was one of the few blogs around in 2003 that convinced me that blogs could be serious and substantial vehicles for saying Things That Need to Be Said. On that front, I like to think that for a while, however fleetingly, I provided the best hockey blogging (a/k/a “hogging”) this blog has ever seen.

Thanks again, everyone! I especially enjoyed the book events, though in retrospect I wonder if the one on Debt went quite as well as everyone had hoped….