Today, we interrupt the series of Jamie Bérubé Stories in order to acknowledge that some people have gotten kinda weary of the genre of Jamie Bérubé Stories. Earlier this week, in one of my other post-GNF bloggy gigs, I posted the .pdf to a new essay on Jamie and Harry Potter and some of the functions of narrative. In response, some of the commenters in one of the best comment sections on the Internets noted that Jamie Stories can be tough to read if you’re a parent of a disabled child who doesn’t do all the things Jamie does. I think about this all the time, actually. And as I pointed out in the Unfogged comments section, I take as my premise one of the most difficult contradictions facing parents and caretakers of people with disabilities: on the one hand, the imperative to insist that there be no performance criterion for being human, and on the other hand, the imperative to point out that many people with disabilities can do all kinds of things the nondisabled world doesn’t expect them to do. (I elaborated on this at some length in chapter five of Life As We Know It, but every once in a while I need to be reminded that not everyone in the world has read everything I’ve ever written about Jamie or disability.)
It should go without saying, but sometimes it doesn’t, so I’ll say it: the last thing I would want to do with a Jamie Bérubé Story is to discourage other parents or caretakers of people with disabilities, or to reinforce a high/low-functioning hierarchy (in which disabled children with the most achievements win the most plaudits and respect), or to engage in a disability version of the insane parent competition, Who Does The Most Stuff For One’s Kid. Doubtless my last few entries in the series have had one or more of these unintended effects, insofar as I’ve been writing about some of Jamie’s teen-years milestones: Wow! Jamie is taking Tang Soo Do! Wow! Jamie is jumping off diving boards! Wow! Jamie is winning medals in Special Olympics! Wow! Jamie knows so many Beatles songs! Wow! Jamie is playing golf! Well, enough Wow! already. In disability-studies circles, the genre in which the Plucky Individual Overcomes His/Her Disability is rightly reviled, and the genre of the “supercrip� is looked upon with much suspicion as well: though we do love our success stories whenever we get the sense that the rest of the world is getting a little kinder toward people with disabilities, we hate the fact that so much of the world’s kindness seems to be predicated on those success stories. (I can say more about this pernicious dynamic in a followup post if you’d like, because the parallel to Michael Warner’s fine book The Trouble With Normal is pretty illuminating: like the LGBT community, the disability crowd worries that any attempt to demonstrate the “normality� of some of its members will leave behind some residuum of the Truly Abject.)
So I’d like to acknowledge something that’s clearly gone unsaid for way too long: there’s no escaping what Janet calls the parental Dialectic of Disability. One day you feel like you’re not doing enough, the next day you feel like you’re “pushingâ€? your kid and obsessing about how s/he stacks up with everybody else. There’s no happy medium. You just keep bouncing back and forth between the two, in wave after wave of self-doubt.
And I hope I haven’t given people the sense that everything is just wonderful with Jamie all the time, and that Down Syndrome isn’t such a big deal if you just take the Right Attitude. (There’s a little story in the DS community about how having a child with DS is like winding up in Holland when you’d planned to go to Italy, and while this story serves the crucial function of reassuring new parents that their lives are not ruined or blasted or just plain over, it’s really not a very good analogy, in the end.) There’s a reason why so many Jamie Stories involve me taking him on trips or playing golf with him or going to aquariums and zoos with him: it’s not like he has friends. Oh, people are mostly very nice to him, and kids greet him cheerily in school and in town, and his teachers and aides like working with him, because he’s a great kid. But he doesn’t have the kind of social network other fifteen-year-olds do; he doesn’t do sleepovers and play dates and just hanging out. (When Nick’s friends were here last month — and Nick’s friends are absolutely wonderful to Jamie — I told Jamie he could stay up until midnight and hang out with them. After a few minutes he came into my study, sat down, and said dejectedly, “I don’t know how to hang out.â€? I explained that he didn’t really have to do anything at all; he could just sit in Nick’s room and listen to what everyone was saying. But, of course, he was quite right. You have to know how to hang out before the invitation to hang out makes any sense.)
Jamie has five more years in the school system before . . . well, before what? It’s hard to say. I still have my dream (well, it was his idea) that he could work in an aquarium or at a natural history museum or on a farm or something, but the employment prospects for people with disabilities are pretty abysmal in this country, and well beyond abysmal if you’re thinking about meaningful employment. And that reminds me! There’s the question of Jamie’s access to medical care. It’s hard to believe that Serious People even try to discuss health care in this country without putting the needs of people with disabilities front and center, but that’s the kind of country we live in — where even the most tepid little liberal health care reforms are mocked by a smug, wealthy pundit class chortling over how the Democrats are “the party of prescription drugs.â€? And that reminds me! Further down the road, we’re looking at the cold fact that three out of four people with Down Syndrome wind up with Alzheimer’s Disease. A couple of months ago, the Globe and Mail reminded us all of this by running a story on DS and AD under the absurd and brutal headline, “Doomed From Birth to Deathâ€?. Now, as anyone who has cared for someone with AD can tell you, Alzheimer’s is a very nasty disease indeed, and I have to admit that I’m not always emotionally braced for the idea of Jamie, in his forties (when I’m in my seventies, should I make it that far), gradually and irrevocably being stripped of his extraordinary memory. And yes, it does seem a tad unfair, in the cosmic scheme of things, that people with Down Syndrome should be so susceptible to Alzheimer’s. But Jamie is “doomedâ€? only in the sense that we all are: sooner or later, for one reason or another, the vast majority of us are going to become incapable of taking care of ourselves. In the meantime, the task here is to make Jamie’s life as pleasant and as free from harm as possible.
And why shouldn’t this be the criterion for everyone with disabilities, regardless of his or her capabilities? Sometimes I think that if more or us would entertain the idea that this world and the people on it (oh, all right, and sundry other life forms too) are all we’ve got, we’d try more strenuously to make our brief lives more pleasant for each other. You know, with less killin’ and oppressin’ in the service of the Flying Spaghetti Monster, and with a livelier sense of the incredible precariousness of it all.
OK, now that we’ve got the cosmic scheme of things firmly in view, here’s Jamie and his cousin Christopher, whom we “borrowed� from my younger sister for a week at the beach (thanks, O younger sister!):
Two quick things of note from the remote outer banks of North Carolina: one, yet another teen milestone. Jamie was finally persuaded (by the guy in the middle) to wade out past the waves’ breaking point and use his boogie board to ride the real waves. They weren’t very big last week, but they gave Jamie some great rides and a few interesting spills. (After one minor wipeout, he got up and exclaimed, “it’s OK! I like it!â€?) Two, it was brought home to us, so to speak, that Jamie had never been the Big Kid in a boy-duo before. Jamie’s just great with younger children, as I’ve mentioned before, but this was the first time he really had to live under a roof with a younger relative to whose wishes he occasionally had to defer. It was fascinating watching Jamie (and Christopher!) adjust to each other — and, because they’re both such good kids, it was fun, too. I mean, if I had a picture of Jamie carrying Christopher on his shoulders in the pool, I’d throw that one in here too.
All we are is dust in the wind, folks. Be excellent to each other.
52 Responses to “Livin’ la vida corta”
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[…] Michael Bérubé writes about raising a disabled child without being sappy, but still manages to be cheerful, and make some damn good points along the way. […]
This essay is why I hate being a social scientist. We strip the life out of life, while y’all humanities folks get to write really cool stuff really well. In other words, you guys are so much better at using language to move people.
Thanks, Michael. That was wonderful.
Wonderful, as always. As for meaningful employment, the sister of one of my parent’s good friends, who had a mixture of amazing abilities and profound difficulties that sound like Jaime’s, worked for many happy years as a teacher’s aide at a day care center.
All we are is dust in the wind, folks.
Or on occasion, sand in the crotch of each other’s bathing suits.
Lovely.
i really love your jamie posts — the terrific stories, of course, but also your thoughtful discussions of so many issues, seen through the lenses of parents facing some extra challenges. some of your running themes are matters to which we should all pay more attention — that each human has individual worth; that assumptions and expectations may prove wrong, even when they concern someone we know intimately; that character is more valuable than achievement as it is often defined; etc. and be excellent to each other.
there’s no escaping what Janet calls the parental Dialectic of Disability. One day you feel like you’re not doing enough, the next day you feel like you’re “pushing� your kid and obsessing about how s/he stacks up with everybody else.
I wonder how different this is than the standard parental dialectic, at least formally.
Also, ever since PK went to zoo camp at this place, I’ve been meaning to ask if you know about Moorpark College’s Zoo program. It’s basically a CC program and I don’t know if it would be a good fit for Jamie or not, but it might well be worth checking out, given his interests. If you ever wanted to head out thisaway and have a looksee, we’d be happy to help out–it’s about a 40-minute drive for us.
Thanks, Michael, for a great essay and a wonderful tricephalous pose. Take that, SEK, and your rampant acephalicism!
I’ll never get tired of the Jamie stories. Sometimes, though, as the sibling of a special needs person, I wish we got more Nick stories. But maybe Nick doesn’t want you to tell any?
I just noticed this citation. Other than my own students, I think you’re the first straight person I’ve ever heard/read mention the text.
oh, and I’d love a follow up. It’s an amazing polemic. I often forget how nonheteronormative my own (sexual) life is by friends, and Warner’s work, in general, has played a major role in my own intellectual development.
Ok, let me try that again:
I often forget how nonheteronormative my own (sexual) life is until reminded by friends by friends,
But yea, I’d still love a follow-up.
Did i mention I’m a social scientist and we’re shitty writers?
“Sometimes I think that if more or us would entertain the idea that this world and the people on it (oh, all right, and sundry other life forms too) are all we’ve got, we’d try more strenuously to make our brief lives more pleasant for each other. You know, with less killin’ and oppressin’ in the service of the Flying Spaghetti Monster, and with a livelier sense of the incredible precariousness of it all.”
Having spent the weekend being a complete ass to someone without a good reason, I am humbled by this sentence. I hope Jamie’s idea of working in an aquarium or in a natural history museum or on a farm comes to pass.
My local vet has someone who appears to be mentally challenged working for him. She greets people who bring in their animals, cleans up the place, fills prescriptions, and performs other care-giving tasks. I don’t know how much (or if) she gets paid.
But if Jamie likes working with animals, then it might be worthwhile checking with neighborhood vets to see if they’d be willing or able to let him volunteer? He could get some experience and maybe it could lead to a career opportunity or at least training for down the road?
Best wishes,
Foucault (feeling like a jerk today).
I wonder how different this is than the standard parental dialectic, at least formally.
Very.
Great photo, Michael.
Well, that’s because we have access to The Canon! You know, like Yeats’s “Lapis Lazuli,” especially the part that goes, “Every rose has its thorn/ Just like every night has its dawn/ Just like every cowboy sings his sad, sad song.” But am I really the first straight person you know who’s mentioned The Trouble with Normal? Because that’s just wrong.
Begging mythago’s pardon, formally it’s pretty much the same kind of thing, Dr. B., with the complication that one is also (despite oneself) calibrating one’s kid against what’s “normal” for other kids with Down Syndrome, and then with the further complication that because of early intervention and inclusive education, we’ve had to keep readjusting our sense of what “‘normal’ for other kids with Down Syndrome” means every decade since the mid-1970s. And thanks for the zoo program link!
Betsy, it’s really Nick’s call at this point. But I think most of the Jamie stories on blogs are stories about Jamie solo because I only started writing them after Nick went off to college. . . .
And thanks also, John and Chris. I think this pic captures Jamie and Christopher quite well, and renders my shifty-eyed demeanor with unfailing accuracy.
Other than students, who may have read it in other (queer studies) classes–just the excerpts about marriage, usually–yeah, I think you are. And I agree that it’s just wrong. My Mass Media and Queer America class starting this week will rely more heavily on Publics and Counterpublics than The Trouble With Normal, so I guess I’m contributing to the problem.
Beautifully written. We have 2 daughters, the younger one is autistic. I connected so much with what you wrote as a proud parent yet concerned for the future- I will also be in my 70’s when she is in her 40’s (may we all be heathy in those years, eh?).
For years, we tried to do everything together as a family- but Charlie and Mary (our elder daughter) are far more outgoing than Jean and me- we tend to be claustrophobic in crowds. It seemed fair when they were younger- but we’re changing that now.
Later this week, Charlie and Mary are going on her firstever trip to a real city- Boston to see the Red Sox on her 12th birthday, the Aquarium, the Gardner museum, Faniuel Hall, Boston Common, Chinatown. Jean and I are staying home and going to a drive-in, the beach, a playground, and having 3 days of “us” time.
(Yes, MA Jeff, more Mainers to freak out on the T!)
Same as you with Nick and Jamie, sometimes balancing Mary and Jean’s individual interests and goals takes work. And it’s so sweet to see them develop a better love, friendship, understanding and appreciation of each other, often by just letting them both BE THEMSELVES. Damned if I can define normal…
(Yes, MA Jeff, more Mainers to freak out on the T!)
wheeeeeeeeeee!
If I might make a suggestion, if they’re up for this sort of thing. Take an afternoon and head out to Walden Pond. If it’s a nice warm day, they can go swimming. Nearby is the DeCordova Museum. It’s a particularly lovely place to have a picnic in the sculpture garden. It’s a bit of a drive outside the city, but really does make a fun afternoon. One of the best things my sister and I did when she came to visit was walk around Walden pond, and find a place to sit and watch and talk.
All Jaime posts make me cry — in a good way, but still. This was beautiful.
On a sorta serious note, you are so right about health care and how unfair it is to have access to doctors depend on having a certain kind of job. My younger son broke out with MSRA — an antibiotic-resistant strain of staph in the form of a skin rash. I have a good friend whose son got a very bad case of the stuff and almost died. The boy was a sixteen year-old high school athlete, about the definition of healthy, and yet he missed three months of school and spent a month in ICU. The total medical bills topped $1 million. My friend’s copay was $100,000. (The boy is perfectly healthy now, which is important.) Thankfully the pediatrician checked and caught Aaron’s long before that.
I do have a point about this other than general venting. MSRA is, as stated, resistant to antibiotics. It’s ugly, painful, and highly contagious; a perfect trifecta of misery. Note the “contagious” part. This is something that takes money to treat and is deadly if not treated quickly and correctly and, especially, with follow-up. One day soon a kid is going to go to school with this stuff, and spread it among all her classmates. It’ll be in a school in a poor neighborhood, so nobody goes to the doctor until it’s critical, and then we have an epidemic. Or a bunch of dead or disabled kids in the poor part of town.
I get what you mean…that’s sort of what I was referring to above when I forget how non-normative my own life is.
One of Warner’s points about normality is that the introduction of statistics changed the human sciences as well as thought about the organization of society (this is probably where he’s at his most Foucaultian). Since the human sciences have, for most of their history, based “scientific” standards on normative values, statistics added power to those normative standards. As I describe it in shorthand to my students, “Statistical normality is transformed into mathematical unity which is transformed into moral imperative.” (”women as a group tend to…” becomes “women are….” becomes “women should be….”) But, it also becomes administrative imperative, with statistics becomeing mechanisms for the organization of society, and the development of “scientific” (normative) distinctions between normal citizens, and abnormal criminals or defectives.
Michael may have a different take, but that’s one of my readings of Warner, at least the parts that would seem most relevent to this discussion.
I can see where some of your posts about Jamie would rub the parents of disabled children the wrong way, particularly parents of autistic children. So much is unknown about autism, and so much of what kind of effect parental involvement can have is unknown. I know my sister, who has a son with autism, often eats herself up with worry about missed opportunities and whether, if she’d just fought harder with the school system about needed services and even recognizing autism as a disability (which has been a problem for her in the past, particularly with DoD schools), Thomas would have shown more improvement by now.
So I can see where Will’s statement at Unfogged that sometimes your stories feel like a rebuke to parents of autistic children that they didn’t do enough comes from.
Another thing, too, is that autistic kids look “normal,” but don’t act it. A kid like Jamie *looks* disabled. Anyone can see at a glance that he isn’t going to have the same capacity as a “normal” kid, so they’re not going to see his acting out or his delay as a behavioral problem, like they would with autism.
So people have very different expectations for them just based on appearance — they expect a normal-looking kid to act one way, and a disabled-looking kid to act another. And, invariably, either kid is going to defy expectations. Whether that’s a good thing or a bad thing depends on the expectations.
Zuzu, good point. DS is different. I enjoy the Jamie Genre so deeply in part because DS is different.
I don’t feel that there is any basis on which I can compare Michael’s experience to my own, because everyone can see Jaime needs more help. I also have no impulse to compare Jaime’s experiences to those of my child, again because everyone can see that Jaime needs more help.
It’s not easier or harder, it’s just different.
If I were raising a child w/DS, I might get annoyed with the Wow! lists because of the excellent chances that my child wasn’t able to have as many of those moments…but perhaps I’d feel reassured that with enough more help, my child might have similar achievements.
I thought Martha Beck’s book, Expecting Adam, while laden with some odd stuff, explored some of the questions about normality and its value in an interesting way. It’s about her pregnancy carrying her son w/DS while she and her then-husband were grad students at Harvard, and all the conversations she had with herself and her community about their decision to continue the pregnancy.
Not as overall helpful as Life as We Know It, naturally, but interesting questions were raised.
It’s not yet safe to visit Mostly Harmless yet–one more LPGA post tomorrow to get the golf blogging out of my system–but I did want to chime in on the Nick/Jamie thread with a serious question. Which is, could you tell more stories about Nick’s early reactions to Jamie? And their relationship? Hmm, guess that’s 2.
I ask b/c onechan is best friends with two disabled kids in her yochien (a 3-year-old boy with a pacemaker and a 3-year-old girl with a range of physical problems that make standing and walking quite difficult). But just like when her younger sister was born, she does a lot of imitating of them when she’s home. By which I mean, she’s moved from saying, “I’m a babeeee!” to “I can’t walk” or “my legs hurt” when she wants me to pick her up or carry her for awhile. It seems she’s watched her girl friend with her dad and likes the way he helps her, etc., so wants me to do that, too. It’s led to a few talks about real life and pretending, truth and lies, empathy and respect, and other light topics.
Ever had anything remotely similar with Nick and Jamie?
BetsyD, I’m also the sibling of a disabled person, and I know what you mean about the Nick stories–the first time I ever read anything about the “normal” sibling in a disability-affected family, I think I cried for an hour straight. And it was a crappy human interest story in my local paper in NC–not usually a source for tearjerkers!–but I just had never read anything from the perspective of a sibling before.
Great post as always, Professor Danger. My brother (whose disabilities don’t seem to fall under a single diagnosable rubric like DS) is now in his mid-30s, and my mom is in her mid-60s but suffering from a neurological disability that has basically wiped out her memory (a la Alzheimers). This is heartbreaking and logistically difficult for all the reasons you can imagine–but it’s been particularly strange for me because I now am the only “reliable” source for information about the last twenty years of my family life. My mom can’t remember things, and my brother either can’t remember precisely or can’t communicate well what he does remember, so I find myself alone in my memories in this really strange way. I guess all that is apropos of nothing, except that I sympathize with your worries about the possibility of Alzheimers *and* your determination to not let it take on a sense of impending doom.
We had a bit of this dialectic within our own (extended) family. On the one hand, there was my cousin K., who is developmentally disabled (ie retarded) at about a 12-year-old level, so she’s able to do quite a bit and is now living on her own in my deceased grandmother’s condominium (her parents bought the rest of the family out so she could live there rent-free). She has a job and is able to get around town pretty successfully with the help of her parents and older brother.
On the other, there was my “cousin” H., who was actually my uncle’s severely developmentally disabled brother. My uncle had vowed that his brother would never be put in an institution, but it was VERY hard on him and my aunt. They were never able to have children of their own, partly because H. was so disabled and required such huge amounts of work. It was a huge, huge triumph every morning he could dress himself … and there weren’t a lot of mornings that he could. He even affected their retirement: they wanted to move to Florida when all of their friends started leaving Wisconsin, but there weren’t even close to the same level of services and activities available to him.
On the “usefulness scale,” H. didn’t rank very high. He was never going to win any medals at the Special Olympics. But he was sweet and loving and, frankly, that was enough for us. He died of pneumonia at the age of 55.
There probably was a certain level of resentment between my two aunts that one of them had a disabled child who was far, far more functional than the other, and it’s flared up occasionally over the years. Not much anyone could do about it.
Begging mythago’s pardon
You’re darn cute when you beg, but perhaps for the reasons zuzu discusses, I don’t perceive parenting issues with my ‘normal’ kids as merely a different degree. Obviously this is a YMMV issue; perhaps it’s some of the things zuzu discussed*, and perhaps it’s because my ‘normal’ kid is so well-adjusted that my main concern is not pressuring her to be the Perfect One.
*Although I don’t find Jaime posts to be a rebuke, or rubbing the wrong way; I find them refreshingly cheerful without sappiness, and there’s not a whit of ‘if only you other parents cared about your kids like I do your kids would do this well too’.
Thank you.
I think the people who are going to be bothered most are the people who are invested in searching for either the cause or the cure for autism, and wondering if they’d just done something differently when their child was a baby, if the child would be “normal” now, or if they’d done something differently, if the child would be cured now.
It seems like, because there’s so little understood about how or why it happens, there’s a lot of parental guilt surrounding autism, whether it’s conscious or not. Add that to a lack of understanding from the people around them about how these normal-appearing kids think and why they act like they do, and conditions are ripe for a parent to just not want to hear happy stories about other disabled kids, even if they’re not sappy. Will at Unfogged, for instance, said he was in a pissy mood because he had spent two hours just getting his daughter to wear pants.
Thanks for suggestions, MA Jeff! If it goes well, we’re hoping it can be an annual event for them for a few more years, then incorporate Jean and me into a trip as she gets older. There’s so much to do and see down there! Charlie lived and worked for years in Boston, so it’s homecoming for him- I get scared just driving 128, even after living in Norwood 20 years ago. Far more comfortable driving in Manhatten than Boston!
Zuzu, I do understand your sister’s conflict- a parent can make themselves NUTS questioning themselves with a “normal” kid, let alone a child with disabilities. You just give it your best and keep fingers crossed. So far, so good.
Actually, Zuzu, wading into a discussion of what parents of children with autism can do for their kids is one of the three last things I’d ever do. (One of the others involves eating onion rings and listening to Journey.) When I come across the debates over vaccinations, for example, I usually just duck. Fortunately, one of my new colleagues here at Penn State does research on autism and parents’ groups, so I just defer to her experience and expertise. But I will say this: DS and autism aren’t even apples and oranges — they’re more like apples and file cabinets. And autism is a very big file cabinet, at that. No one knows quite what it is, to begin with; and its range of expression is mind-boggling. You mention the fact that autistic kids don’t “look” disabled — well, some of them don’t “sound” disabled either, like the young man to whom I spoke about baseball for about twenty minutes. He had an encyclopedic knowledge of the game, but there was nothing to distinguish him from any other baseball-smitten kid other than his mother’s warning to me that we had to stop at a certain point. And then there’s my young half-brother (long story), who’s nonverbal. And then there are kids who require two hours and every last shred of their parents’ patience just to put on clothes in the morning. So no, I won’t traffic in any invidious comparisons.
And OK, just because y’all asked, I’ll tell one Nick and Jamie story next week. For Nick’s reaction to Jamie’s birth and infancy and toddlerhood, there’s always That Book, which is miraculously still in print after 11 years, hangin’ on by its figurative fingernails. . . .
Mnemosyne, PhoenixRising, Louise, sweet machine, thanks for sharing, as they say. Sweet machine, that story is actually apropos of everything. And you too TC, and wasn’t that Ochoa-Kerr staredown something? Too bad Lorena blinked first. I like her. But congrats to Christie! (That’s U.S. Women’s Open talk, for everyone else reading this thread.) Jamie didn’t hit any spectacular shots on this Saturday’s golf outing, but he did get himself out of sand for the first time, and smacked three consecutive solid 7-irons on number nine. His dad, meanwhile, barely missed his first-ever 13-foot eagle putt, after a Jamie-quality 5-wood from 205 out.
And I don’t think that you *make* those comparisons; I’m just saying that I understand how parents of autistic children would infer them should they be in a certain frame of mind.
I mean, just even the “God, wouldn’t it be nice if the world knew at a glance my kid was disabled, and I didn’t have to fight with school administrators who just don’t believe in autism or think that the kid just needs a spanking” factor alone is enough, depending on mood, to make some people cranky about reading heartwarming stories about a kid who never has to *convince* anyone he’s disabled, let alone spend years and thousands of dollars in legal fees trying to get his school to follow federal law and follow his IEP.
Don’t you have any Nick stories, full stop?
If there’s one thing I hate, it’s the pressure to be Exceptionally exceptional. Or Normally exceptional. Or just Exceptionally exceptional enough to make a good story, but not so much as to be showing off. Or . . . well, you get the idea. But if there’s one thing we all have in common, disabled, siblings, non-disabled, parents of all kinds of kids, it’s wanting to have our own experience recognized and validated. Some versions of What It’s Like To Be (whatever) are always going to be more popular than others though, and they get normalized through sheer repetition, then everybody else is measured against them. Some disabled people, as well as some parents, have been guilted so often about not matching the cover photo on the manual, or not doing/having done whatever this year’s theory of How To Make It All Better is, that they start anticipating a guilt spray every time something moves. I think a big part of being excellent to each other is cultivating patience.
I love the fact that you celebrate Jamie’s accomplishments, along with sharing your worries about Jamie’s journey. Every child’s accomplishments are unique to him/her and worthy of being celebrated, as far as I’m concerned. There’s a big difference between that and parental triumphalism, but that won’t always be obvious from any one story, perhaps.
I hear you. I’ll add only that plenty of people whose kids do look disabled spend years and thousands of dollars in legal fees trying to get their schools to follow federal law and IEPs, too. But I’m not gonna minimize the struggles of people who have to deal with flat-earthers who “just don’t believe in autism.”
I got a million of ‘em! And I told one of ‘em in that Harry Potter piece, btw.
Thank you. I just love family stories, period.
How do you feel about Pretzel Styx?
One of the perspectives that I have gained from reading Life As We Know It and various Jamie stories has been the tie-in of the “disability” experience and diversity in the broadest sense of the term. Now I do think that casting it in these terms is fraught with the peril of falling into the “All Part of God’s Great Plan” abyss on one side and into the “Going to School on the Disabled” abyss on the other. But in the end I believe that we are remiss and less human if we don’t engage fully with the broad spectrum of human experience - and this includes not only the perspective/experience of the “disabled”, but that gained from the experience of parents, other family members, caregivers, service providers who must learn to accomodate, lawmakers …. (basically everyone except Glenn Beck). Now this is my takeaway, do not know if it was Michael intends, but in addition to being a test of our basic humanity I think it is a diversity that we can use positively, along the lines apparently discussed in Scott E. Page’s The Difference: How the Power of Diversity Creates Better Groups, Firms, Schools and Societies. In particular, by paying close attention we can all better cope with the profound dislocations that medical technology is likely to bring to the lives of everyone in the coming decades. I personally expect what it means to be fully human to come under even greater strain - it is imperative that we get it straight now, rather than later.
And on my elliptical comment on sand in unfortunate places, from the picture it looks like for the boys it is all good. For the old guy in the middle, maybe not so much.
Pretzel Styx! That’s the one they can’t beat, and you know it!
Golf comment alert: yeah, I wanted Ochoa to win, if only to get Malkin started on the Mexidemocommiemuslifascislamist threat on the LPGA, but I figure Ochoa’s going to get hers in bunches someday soon, so I was happy for Cristie Kerr (who I’ve been saying, despite all evidence to the contrary this season until two weeks ago, is the best American female golfer). I even got to watch the ending on Japanese tv–sure beats watching numbers change on a web site, I’ll tell you that….
A speaker was over here a few weeks ago and the people helping him with all the logistics were telling him to really plug his book, so every few minutes he’d insert “BUY THIS BOOK” into his talk. It got pretty funny. And you know what? Everyone bought his book–even me!
Can’t remember what made me think of that….
Can’t resist, one more golf comment, really question. So you did make the birdie, right?
Great post, of course. I wanted to point something out about the friends issue…
Maybe it won’t always be the same as it is now. He sounds like a great, outgoing kid, and even if it might take him a while to get the nuance of friendship dynamics and just hanging out, I bet he’ll get there. I have a good friend with Downs - I’ve know her my whole life (I’m 37), and while I will admit that she was kind of a tough hang-out when we were kids, as adults we’ve become good friends and I hang out with her and have fun in the same way I do with all my friends. She’s quite a charmer and kicks my ass in mini-golf and we have a lotta laughs. She also happens to be the most inspiring person I know, so I feel lucky to count her as my friend. She’s done more with her life already than I will probably ever do. Really. Ppfh, I can barely get off my couch… this woman holds down three jobs that she loves, travels all around the country doing speaking engagements, she was appointed by Clinton to his Presidential Committee on Mental Retardation, she started a fund called the “Up” Syndrome fund where she’s raised a lot of money for the cause, and she’s got friends (real friends) all over the country. Young Jamie also sounds like quite the character and hopefully he’ll find his way with future jobs and friends, and he’ll find his happiness.
Thanks! I certainly hope so. In the meantime, I tell him not to get too discouraged, because he’s such a great kid.
A tap-in, yes. Whew! At least that’s settled.
The blood dimmed tide is let loose, and everywhere
The ceremony of innocence is drowned;
The best lack all convictions, while the worst
Are full of passionate intensity.
Discribes the posters here at Pandagon, and their worship of Be’rube’ the falconer who trys to control the beastly posters of Pandagon.
Whose innocence are you on the prowl for Be’rube?
Oh no!
abbz has a Yeats infection!
Here, abbz.
No idea why you’re being like that, but this might help.
Hi, abbz! I liked you better when your name was gotto. Also “Abe” and “Atzlan” and “methra” and “azalem” and “dupa” and “athe” and “tu culpa.” Because this new handle is kinda boring.
Now dance for me! Dance, I say! I’ve given you a little embedded video to get you started.
Look not too long into the abbz, Michael, lest, well, you know.
Yay, gotto’s back!!!!
they’re more like apples and file cabinets
Heh. This is actually a very apt comparison in so many ways.
I just saw this at THE GIMP PARADE, so pardon me for coming in late on this.
I’m a long-time Jamie fan, but this is my first post concerning him. Ironically, I just read your book about him a few months ago.
There’s a reason why so many Jamie Stories involve me taking him on trips or playing golf with him or going to aquariums and zoos with him: it’s not like he has friends. Oh, people are mostly very nice to him, and kids greet him cheerily in school and in town, and his teachers and aides like working with him, because he’s a great kid. But he doesn’t have the kind of social network other fifteen-year-olds do; he doesn’t do sleepovers and play dates and just hanging out.
Take this for what it’s worth, from someone born with CP and knows whereof he speaks. I was wondering: Is Jamie attending “elite” schools? Private schools? Kids in private or prestigious schools are usually polite, but extremely concerned with appearances and having the “right” friends. Have you ever thought of sending Jamie to a public school?
Public school (as James Joyce said about the Catholic Church) means “here comes everybody”–and chances are, Jamie would make friends there. However, they may not be the kinds of friends you want him to have. They will be all over the lot: kids with parents in prison, various races and disabilities, weirdos and misfits. But they will be his friends. They will accept him as he is. They accepted me. Not ALL of them, of course, but enough.
Yeah, I got kidded and called gimpy and all the rest of it, but I learned to be part of a group. It was a turning point in my life, to finally feel as if I had a peer group, even if only the school weirdos and outcasts. And of course, some of those kids were the smartest kids in school. They helped me and looked out for me.
The difference in private and public school is literally the difference between paying to get in somewhere, and going somewhere for free; I found I liked the poorer people far better. They had troubles too, and did not expect everything and everyone to be perfect or “succeed” (bourgeois idea of success). It was day and night.
Consider it. You can always change your mind later. And if he IS going to a public school, send him to the largest, most diverse one in town. I did, and after the culture shock of it wore off, I had the time of my life.
Good luck Michael and Jamie–it is a pleasure to read about both of you and your good times.
Hi, AG. Yes, Jamie’s been in public school all his life. We feel just the way you do about public schools, and thanks to the insanely inequitable way public schools are funded in the US, Jamie’s attended a bunch of exceptionally well-funded schools from kindergarten onward. Rural college towns are like that, with their high property tax bases, esp. when compared to the impoverished areas that surround them.