Independence day

by Michael Bérubé on September 16, 2012

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….

{ 46 comments }

1

Tim O'Keefe 09.16.12 at 3:02 pm

Michael, thanks for your thoughtful and humane posts on Jamie. I hope that both of you fare well.

2

marcel 09.16.12 at 4:12 pm

Michael:

For my own selfish reasons which likely do me no credit (though I think they reflect well on you) I regret your signing off the blogotubes yesterday, today or ever. I have occasionally disagreed with you, but I’ve found them all entertaining and often informative, except for your hockey posts. Enjoy your, um, vacation (that is, of course, all it is, I hope).

3

Ebw 09.16.12 at 4:21 pm

Jonah is asleep in my mom’s bed. He too is making progress towards that precarious delight.

4

bill benzon 09.16.12 at 4:33 pm

Holy Joker! Michael. That’s great news about Jamie’s Independence Day. I mean, I’ll miss you on the bat-tubes, though your appearance has been rather spotty as of recent, but that’s GREAT news about Jamie.

5

Matt 09.16.12 at 4:45 pm

But most people find the system pretty bewildering at first go.

Just don’t let him ride on the weekend most times. All that “The Q goes on the S until _ St, and then on the R. The R goes only uptown” and the like is bewildering even for people who ride it all the time. (The on-line help is somewhat more helpful now, though.)

6

Patrick 09.16.12 at 5:02 pm

All the best to you. All the best to Jamie.
Thanks.

7

Michael Bérubé 09.16.12 at 5:14 pm

Matt @ 5 — that was my reading of The Dark Knight Rises, actually … that it’s all about some crazed anarchoterrorist who tries to bring Gotham to its knees by making incomprehensible announcements about service interruptions on the weekend Q train.

8

Bloix 09.16.12 at 5:31 pm

Michael, it’s pure pleasure to hear your voice again, and to have the opportunity to tell you what a difference you’ve made to us fans of your blogging life. I once said in a comment on your blog that, after I gave my teenaged son your Tale of the Broken Hockey Stick as a model of essay writing, he said to me, “That Michael Berube, he’s a beast!” It was true then and it’s true now.

It’s fitting that Jamie is celebrating his 21st on the eve of the anniversary of the creation of the world. May he, you, and all your family be inscribed and sealed in the book of life for a happy, prosperous, and healthy year.

PS – that is one fine hat.

9

Substance McGravitas 09.16.12 at 6:05 pm

Great news for Jamie and you! Thanks for everything.

10

John Protevi 09.16.12 at 6:21 pm

Thanks, Michael. A wonderful post, and while it will be sad not to read more Jamie posts, this is a grat note on which to leave.

11

Witt 09.16.12 at 7:56 pm

I’m teary.

Thank you for this post, and thanks to Jamie for allowing his life to be shared.

12

Malaclypse 09.16.12 at 8:40 pm

Best to you, and to Jamie.

13

Alan 09.16.12 at 8:43 pm

I almost didn’t read this exquisite piece of honest, life-affirming writing; my day would have been so much poorer had I not. Thank you for this.

14

poco 09.16.12 at 9:52 pm

I am sorry that you won’t be blogging any more. Finding a post of yours was always conducive to a feeling of joy and pleasure–and I thank you for this one. Best to you and Jamie.

Still hoping that in the not too distant future, you will return to blogging.

15

Dave Maier 09.17.12 at 12:02 am

I second Tim et al about our thanks, Patrick et al about our best wishes for you and Jamie, poco about hope for your return, and Bloix about that very fine hat.

16

Sherri 09.17.12 at 12:19 am

I’ll miss your hockey posts. Go Pens!

17

Adrian 09.17.12 at 12:22 am

Thanks for the update on Jamie’s adventures. Your voice will be severely missed on this blog, just as the blogosphere is missing the voice of your own blog. Best wishes!

18

Wax Banks 09.17.12 at 1:01 am

Look at that fucking hipster! :)

19

Leeds man 09.17.12 at 2:23 am

Prof Bérubé, you’re like a big jam doughnut with cream on the top. Thanks, and all the best.

20

Michael Bérubé 09.17.12 at 2:35 am

He is a total hipster. His hat was made in Williamsburg and his glasses are vintage Declan McManus ca. 1977. He “curates” home-brewed beers and has developed a taste for elk burgers with mac and cheese on the side, made with orzo and gruyere. He is an Insufferable Music Snob who is already so over the whole backlash against the post-Strokes/neo-Television revival. He is … the most interesting young man with Down syndrome in the world.

And still, I love him to death.

21

atdilts 09.17.12 at 3:14 am

thank you. thank you. thank you. best forever to you and to Jamie.

22

dilbert dogbert 09.17.12 at 3:15 am

We thought we would spend the rest of our lives taking care of our autistic son.
Things happen. We went through the same worries about our son taking the bus from San Jose to Palo Alto to attend his school. Somehow that happened with out much trouble.
Short story: Now he lives in his own apartment, drives a car and works in a protected workshop. He gets around the State of California and even as far away as Portland OR.
Good things happen
Sad to hear again you will be leaving us. Your blog comments always gave great enjoyment. Thanks

23

JanieM 09.17.12 at 3:53 am

Sorry to see you go, Michael.

And — just under the wire (at least in the time zone I share with NYC, if not in the CT accounting) — Happy Birthday, Jamie!

24

John Quiggin 09.17.12 at 6:02 am

A great post to go out on, but I hope we’ll see you back some time.

25

Michael Bérubé 09.17.12 at 11:55 am

Thanks, John! I suppose I should keep the keys to the engine room, just in case.

26

EB 09.17.12 at 1:00 pm

Well, my completely typical 27-year old daughter who has now lived in NYC for about 6 months (and who was an expert at getting around Chicago on the El/subway system), limits herself to a tiny portion of the NYC subway system, out of fear of getting lost.

27

Richard Utt 09.17.12 at 1:08 pm

What a delight to hear about Jamie again. He sounds like a delightful son. He has a wonderful father.

28

tomslee 09.17.12 at 1:13 pm

I’m originally a Leeds man, so let me echo what Leeds man said. You are indeed a big jam doughnut with cream on the top. Thanks from me too for the insight and the wit, and all the best.

29

mds 09.17.12 at 3:32 pm

that it’s all about some crazed anarchoterrorist who tries to bring Gotham to its knees by making incomprehensible announcements about service interruptions on the weekend Q train.

Oh, now that’s just absurd. Tom Hardy’s Bane was much more comprehensible than MTA service announcements.

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).

You could see the Silvercup sign whenever you wanted? My envy knows no bounds.

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.

Technically, that’s “the Ed Koch Queensboro Bridge,” something to remember if you’re ever tempted to start believing in a just and merciful God.

Anyhoo, it’s depressing to realize that you’re even more unlikely to blog anywhere than before, but best wishes anyway for the New Great Adventure. (Just because it always has to be about me, I admit that I read this awesome spreading-of-wings story with mixed feelings, as I can’t help fearing for the ever-more-independent mdslet, and I can’t help fearing about the effects of fearing too much. If you know what I mean.)

30

Steve LaBonne 09.17.12 at 4:51 pm

Thanks, John! I suppose I should keep the keys to the engine room, just in case.

Please do! You’ll be greatly missed. And tell Jamie he has a lot of people he doesn’t even know who are rooting for him at every step, as a result of the wonderful writing you’ve done about him.

31

Salient 09.17.12 at 5:34 pm

So long, and thanks for all the many years of awesome posts that we all got to read for free. You will bé missed ’round here.

32

chrismealy 09.17.12 at 6:00 pm

You’ll still pop in and keep us updated on Jamie, right? Please?

33

aaron_m 09.17.12 at 8:43 pm

:)

34

Antti Nannimus 09.18.12 at 12:37 am

Hi Jamie,

You have such a classy fedora, I envy you! I have one like it, chocolate brown. And it’s true, nothing I’ve ever owned gets more compliments than that hat.But my brown fedora is not as good as yours. If we ever get the chance to meet each other, I’m gonna try to trade with you.

Have a great day,
Antti

35

Maria 09.18.12 at 7:25 am

I wish you weren’t leaving us, Michael! Please do keep the keys to the nuclear codes. And bravo to Jaimie.

36

grackle 09.18.12 at 5:40 pm

I was sad but understanding when chez Bérubé shut down; I can also understand this,but would humbly suggest that CT remains and one would hope will continue to remain a congenial venue for an occasional essay, if you should ever feel the urge to share your charming prose with a few thousand strangers…

Thanks for the delight and thank you for the introduction to Jamie.

37

ingrid robeyns 09.18.12 at 7:02 pm

Your story reminds me of a book I read this Summer about which I planned to blog – and I should. I will. Soon, probably this week (but not tonight).

In the meantime: you should stay – in one way or another.
Not just because there are people here who like you and/or your blogs. But also because there are not enough people out there being able/willing to writing frankly, openly, and without too much filtering, about raising a child with disabilities. For so many people, blogs like yours (or the equivalent in the printed world) is their main entrance to getting some idea of what it is to either be disabled or do the hands-on care for someone with a disability. There are reasons, and in my view good reasons, why many people decide they can’t write about these things (non-anonymously), but it means we don’t hear voices like Jamie’s and his parents often enough. That again, and the dilemma’s that I see in this area, are material for another post – but not this week.

38

Michael Bérubé 09.19.12 at 12:12 am

Thanks, everyone — of course I’m rethinking this whole “retirement” thing now. Apparently there might be some kind of “emeritus” deal in the works that allows me to keep my parking space, a mailbox, and some computer/printer privileges….

39

g 09.19.12 at 3:13 am

What a wonderful young man. I am thrilled he had his Independence Day.

Reading this reminded me of when my son went to kindergarten and we arranged for the bus to drop him off after school at his afterschool day care. At first, I rode with him on the bus a couple of days. Then, I put him on the bus, told him I’d meet him at the bus stop and walk him to day care. (which I did, for several days.) Then I let him go by himself, though I didn’t tell him that I shadowed him for a week, watching to make sure he got to day care OK. Then, finally, I felt like he was OK.

I had a dear friend who worked for the ARC, which is a group that helps empower “retarded” adults (sorry for the word, but that’s in their name). She kept emphasizing to me that her clients were ADULTS, and that they deserved to be treated like adults, not children. It is a hard adjustment.

Jamie looks confident, he looks like he has good sense, and he sounds like a wonderful young man. Congratulations, dad!

40

Helen 09.19.12 at 9:54 am

Happy 21st, Jamie!

And I will miss your writing, too, Michael. Also, ditto to Crooked Timber being one of the best blogs in the blogosphere.

41

jimintampa 09.19.12 at 1:40 pm

I’ll miss your presence on CT. Your’s is one of the most distinctive voices in the blogosphere. That said, next time you’re in NYC, if you go to the downtown end of the train at the 14th St & 8th Avenue it’s a short walk to Benny’s Burritos on Greenwich Avenue, a time capsule of the early 1990s. I got there two weeks ago during a very long stopover in Newark Airport (no it’s not Liberty) and it was just like the last time I was there in 1993. Anyway – if you decide to reblog, please let us know. Thanks.

42

Barbara 09.19.12 at 3:22 pm

Everyday at about 2:30 I have a fierce internal debate about where exactly I should stand while I wait for my 15 yo with ASD to get off the school bus. Certainly not at the bus stop and certainly not at the house, a two-and-a-half block and around-a-corner walk away. Every day I make myself move a little further from the stop. Am I weaning me or him? Or maybe the bus driver. So your stories about supervising Jamie’s trips to the food markets resonated with me.

On another note, a few years ago I asked autism guru Peter Gerhardt what would be the best place for an adult with autism to live. He replied that he used to say California but not now, with all the funding cutbacks. He paused and then said, “A city, a big urban area. There’ll be many more employment possibilities and you don’t need a car.”

43

Alison Piepmeier 09.19.12 at 8:23 pm

Go, Jamie! Way to be independent!

And let me say in defense of independence: at the College of Charleston we have the REACH Program, and REACH students–who have autism, Down syndrome, and lots of other sorts of intellectual disabilities–walk around independently, around our campus and around the city of Charleston. One of the earliest parts of their college experiences is being trained (like all other CofC students) where their classes are, and how their class buildings relate to their dorms. They have folks who will help them get where they need to go for the first few days. Then as they learn their way, those folks leave them alone.

They walk themselves to my class, and when my class is finished, they walk themselves to their next class. They come to my office hours on their own. Right now one of my REACH students is sitting in the Women’s and Gender Studies office, having snacks with other WGS students. She got here by herself. She’ll go back to her dorm room by herself. Like other college students.

Let Jamie know that if he wants to take fully inclusive college classes on Women’s and Gender Studies, and Disability, Power, and Privilege, and lots of other things, and walk around campus on his own, he should come to the College of Charleston. We would love to have him.

44

JP Stormcrow 09.20.12 at 1:06 am

Kudos to Jamie on b-day and independence-program-related activities.

And I guess the same to you on the trick of apparently relieving yourself of the burden of not posting on Crooked Timber by deciding to no longer post on Crooked Timber.

45

PM 09.20.12 at 2:05 am

Dear Michael,

Thank you for your blogging, now and for a long time in the past. It has meant a lot to me.

46

Eli Rabett 09.20.12 at 10:31 pm

Watch Jaime blog:) (Why not??)

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