Adventures in Modern Life

Post-Manuscript Journal, Part 3

2011-12-12T12:31:00.000-08:00

About two weeks ago I learned my book is already available for pre-order on Amazon. Woo-hoo!

I asked all my friends and relatives to order. The idea, at this point, is to keep the numbers up. Don't know how exactly Amazon calculates that stuff, but it's supposed to be important.

I've checked back on Amazon occasionally. Last week I noticed my bio had been added. Not the version I wrote exactly, either. But not bad.

Today I notice the publisher has actually posted a description of the book. Wasn't there before. Surprising to me, since Skyhorse has only seen the opening chunk (same as anybody else who's followed this blog).

The book description is a tad cheesy, but I like it. Hope my book lives up to it!

I haven't yet consulted with Skyhorse's publicist at all. But it's heartwarming to know that somebody's been secretly working behind the scenes of my behalf!

More news as it develops…

http://amzn.to/th0krx

Post-Manuscript Journal Part 2

2011-11-29T15:44:00.000-08:00

Today I got my first unsolicited pitch from a book publicist.

Didn't know publicists did that sort of thing, but I confess to being flattered and impressed. The outfit--Newman Communications, in Boston--knew the name of my book, knew the approximate publication schedule, and actually went to the trouble (well, Google) of finding my Web site in order to find me.

Presumably, this means the publisher has been leaking announcements through the grapevine.

It so happens I have been interviewing publicists, and while I would never call upon someone who accosted me--say, a telemarketer--this one I am tempted to consider.

The occurrence is just the latest surprise I've experienced since completing my manuscript.

Over Thanksgiving, I saw my family for the first time since it's been done and since they've had a chance to read it. Everybody likes it, and is supportive, but I find that afterward I'm feeling a bit shaken. As if I stood in front of the class with my zipper open!

Is this what's in store for me, as others read my innermost secrets, thoughts, fears and dreams?

Well, if I didn't want people to know my perspective on life, I shouldn't have written about it for publication. Right? What did I expect?

Yet I think because it was family the reaction was particularly charged. I myself was nervous in a way I haven't been in decades (am I regressing? I pondered), and their comments-- "curious you left out such-and-such event," "I've been avoiding bringing this up, but since you mention it in your book, well, I've always wanted to say…"--felt unusually bare and frank and bold. Or maybe I was just reading extra dollops of Significance in them.

Not to worry. Soon the thing will be sent off to the publisher, and then I'll begin the publicity push in earnest. Onward and upward!
But first, maybe I ought to call back this Newman fella…

Schlubs like me?

2011-11-14T11:29:00.000-08:00

Last summer, two days after I announced my humble book deal, someone asked me for the name of my agent. That's how I knew something bigger had changed, at least temporarily. I had arrived.

But arrived where? It's my first book, and I'm excited--but the publishing contract certainly isn't lucrative (I've been paid more for some of my smallest articles). And there's no indication this venture will prove successful.

So why should anybody think I'm a useful contact?

I mean, I got the concept. I'd done it myself, scrounged for referrals to agents. But when I did that, I'd hit up, you know, big popular best-selling authors. Not schlubs like me.

Looking back, though, I remember the desperation and isolation I'd felt when getting an agent was the goal. It was like screaming and wondering if anybody would ever hear you. After a few years someone signed on to represent my project. Hooray! Yet still there was work to be done.

Under her tutelage, I had to put together a proper book proposal--including writing a sort of marketing plan and a detailed, chapter-by-chapter outline. For me, the outline was the hardest part. I've never used outlines. My agent called it a Table of Contents, but that didn't help much.

Once the book proposal was done, of course, the goal became finding a publisher. No, it's not an automatic next-step when you have an agent. At least not a hard-working agent like mine; no doubt there are some highfalutin agents who are so well known and well respected they can practically snap their fingers and publishers line up, guaranteed. Maybe. If you can get one of those agents, you must be pretty highfalutin yourself—in which case you hardly need an agent except to negotiate terms.

That's a very different job from hustling your baby--er, your book proposal or manuscript--around to publishers, trying to generate interest much less a contract.

Anyway, there I was with an agent … and eventually a proper book proposal. It took another few years to find a publisher. And in all humble honesty, I can't say my agent exactly found me a publisher. She tried, to be sure. But I had to work a few connections myself to make the thing a reality.

Funny, but the publishing deal I'd mentioned--which brought someone to ask for a referral to my agent--fell through. Fortunately, I hustled a bit, called in some favors I didn't know I had coming to me, and quickly lined up an alternative deal. (It came so quickly, in fact, that I never bothered to announce the change.)

Fast forward three or four months to today: the manuscript is finished. It went faster even than my most optimistic projections. That's either because it's a story I was burning to tell or because I did a slapdash job. The verdict is still out.

It's not due in to the publisher for another month, so I still have time to revise.

Writing it was, at times, more painful than I'd supposed. Conjuring up past pain, stupidity and peril makes your heart quicken and sour. I hope that means I got in touch with some true feelings. (Otherwise, it was a helluva sucky ride for nothing!)

I decided that because the book is not meant to be an exposé, and I'm not trying to settle old scores or have the last word about anything, I'd show the manuscript to my family--or at least those members who have large supporting roles in my story. This was partly an exercise in fact checking. Also, I wanted to protect them from any nasty surprises.

Overall, the family reviews are good. Not exactly unbiased, but mine tends to be a judgment clan. Predictably there are a few nits to pick. There are things that seem important to one person and are all but forgotten by another. I find myself arguing--at least in my head--that this is MY story. If you want it different, write your own! Nasty stuff like that. I get defensive. I know I shouldn't. If someone were writing about me, I don't think I'd exactly love the attention either … unless it was all praise, which it wouldn't be.

So here I am, book complete, a month before deadline. Will I truly read it over again and consider revisions? In all honesty, I don't want to. I'm still digging myself out of the dingy well of memory and in no hurry to return.

If I left out something important, I'll just use it in my next book!

JERRY LEWIS' LEGACY

2011-09-04T18:46:00.000-07:00

For the first time in nearly half a century, the Labor Day telethon for the Muscular Dystrophy Association won't feature Jerry Lewis this year.

Since his abrupt resignation/dismissal in early August, speculation has abounded. What happened? Who's to blame? What's next for him and for the charity?

As an ex-MDA poster child and one time anti-telethon demonstrator, I have my own perspective on all this--and a few suggestions.

The following--or a version of it--was going to be aired on NPR on Labor Day. But at the last minute it got cut ... too late to resubmit to newspapers. So here it is…

JERRY LEWIS' LEGACY

By Ben Mattlin

I remember my mother telling me back in the 60s that Jerry Lewis would stay on the air for 24 hours straight just to help people like me. I was born with spinal muscular atrophy, one of the many diseases that his charity, the Muscular Dystrophy Association, aims to cure.

As a kid, I was an MDA poster child, though I never met Jerry. I quit after a magazine ad had me stand in leg braces under the caption, "If I grow up I want to be a fireman." It was a lie. My life expectancy was normal, even by the medical knowledge of the time, 1969-70. I hated standing in leg braces, much preferred the comfort of my wheelchair. I didn't even want to be a fireman. I tried to cross my fingers in the picture where you can't see. Afterward, I told my parents I wanted out. I really didn't like people feeling sorry for me.

Decades later, I discovered many other people with disabilities felt the same way about the organization's fund-raising tactics. I joined with them in protest.

The primary reason so many of us demonstrated against the telethon in years past was the way it exploited pity to raise money. The ends didn't justify the means, we argued. We were fighting for respect, for equality, for jobs, and access to all society affords. Getting people to cry and hand over their spare change just wasn't in our program.

In the years since our demonstrations, the MDA has made many of the changes we advocated. It's put more people with actual disabilities in positions of authority, albeit mostly as volunteers. It's changed its language somewhat, and become more involved in political advocacy.

But mostly the MDA provides neurologists for the uninsured. It's a kind of secondary insurer. It also subsidizes physical therapy and some necessary equipment. It has run accessible summer camps and, of course, funds medical research.

Yet one of the key problems was never resolved: Jerry Lewis himself. I think the kindest way to explain what was so bothersome is that he was an anachronism, in the way that certain terms we now think of as offensive slurs used to be acceptable. Sure, a man his age can be forgiven for being hopelessly behind the times. But Lewis steadfastly refused to recognize the disability-rights movement, even maligned those of us who demanded respect, calling us "leeches" who were simply "bitter at the bad hand they've been dealt." He once threatened, "I'll have you killed. You understand? I'll have you killed." (If you don't believe this, see Vanity Fair magazine from September 1993, Leslie Bennetts' "Jerry v. the Kids.")

It may seem unkind now to point out his faults. He undeniably brought people with disabilities into America's living rooms at a time when many of us were shut away in institutions. Unfortunately, the image of disability he portrayed was relentlessly sad, demeaning, powerless.

Lewis' departure gives the MDA an unprecedented chance to embrace modern disability culture. Though the organization said no one will replace Lewis as its chairman, someone has to be the new spokeserson. Perhaps it can be someone who is more in sync with disability pride.

Maybe even someone who uses a wheelchair.

--------

Check out this YouTube clip : Jerry sings "You'll never walk alone" to poster that says "Help Me … Please!"

THE KING'S SPEECH DISABILITY

2011-04-25T13:12:00.000-07:00

A quick note, then it's back to work:

Just saw THE KING'S SPEECH--finally. A fine, fine film … dramatically, cinematically, tonally, textually, texturely, musically, lightingly, mood-wise, etc., etc. The best picture Oscar was well deserved.

But…

From a disability-consciousness perspective, sorry to say it bothered me.

Now, this is a SPOILER ALERT, but by the end, King George VI is not so much cured of his speech disability as empowered to cope with it better. That's the good news.

Throughout much of the film, however, his stammering seems a sort of stand in for or emblem of the abuse he's endured from his stern father, teasing schoolmates, and others.

Does being forced to use your right hand when you're naturally left-handed, for instance, and other indignities, cause speech impediments? Really?

Of course, the movie doesn't say as much outright. And it is based on a true story. But I presume we don't actually know what exactly went on in the Prince of York's speech therapy sessions. Did all these personal matters truly get discussed? Much of the time, his treatments look more like psychotherapy than vocal rehab.

I guess that's the point. Throat exercises weren't enough. It took a combination of silly things like rolling around on the floor AND confidence-building psychoanalysis to make poor Bertie ready physically and emotionally to wear the crown.

Am I off-base here?

(In some sense it reminded me of GOOD WILL HUNTING. Which was a different kind of coming-of-age movie about a magical therapist, minus the physical impairment.)

THE KING'S SPEECH is ultimately about overcoming an affliction, is it not? No one else is made to change their ways, to meet him halfway, to accept or to accommodate. Perhaps that's a just sign of those times, the 1930s. You had to adapt to society's expectations or get out of the way.

But think of the dramatic effect if at least one person had said "let's change what WE do to be fair to you and your speech disability." Instead, he himself has to change--to work at making others more comfortable with him.

Now, I DID like the bit about Hitler being a good public speaker. Fluent, strong speech doesn't make you a good person.

Nevertheless, it further struck me that it's Bertie's wife Elizabeth who first gets him the help he needs. Either no one else felt he needed help before, or cared enough to try, or everyone else dismissed him as hopeless. We're made to see her actions--the inciting incident of the storyline--as an expression of love. She, in effect, saves him.

I wonder if that part is true-to-life. It's a nice, romantic notion. But how many of us with disabilities have learned it is, in fact, entirely up to us to resolve our problems--to fight for what we need and deserve, whether that's a specific technological aid or plain old justice!

No matter how supportive those around us may be, they can't fix us or solve our issues. They can't lead us in pursuing rehab, finding appropriate assistive devices, or seeking equality. In fact, those around us who do care often become understandably exhausted, lose patience. Why not? They have that choice. They can even walk away from the frustrations.

Whereas we can't. When your life or quality of life is on the line, you don't give up.

***

On a happier note, I was delighted to receive a pleasant e-mail about an NPR piece I recorded several years ago. I'm glad people are still finding it useful. He asked me to share a link:
http://network.crcna.org/content/disability-concerns/will-people-have-disabilities-new-heaven-and-earth#

Guilty pleasures

2011-03-29T18:38:00.000-07:00

1. Amazon.com. While I was shopping online for some stuff for my daughter, I came across a DVD of old black-and-white mystery movies. Four movies on one disc. It was about the price of a rental. I added it to my cart.

2. Old black-and-white movies. So last weekend my wife and I popped the DVD of old mysteries into the machine. We had seen (and liked) "The Kennel Murder Case," with William Powell as private-eye Philo Vance, before, so we skipped right to something called "Eyes in the Night." It starred Edward Arnold as wealthy private investigator Duncan "Mac" Maclain, whom I'd never heard of. Well, not only was it a pretty good little flick, but Mac happens to be blind. Now, before the PC police get on me, the disc did not have Closed Captioning or Descriptive Video. Nevertheless, I thought the depiction of disability was pretty cool. He doesn't have superhuman hearing or smell, but he is constantly under-rated, especially by the bad guys. He does things like turn off the lights to disorient the bad guys. Naturally, the darkness has no effect on him, so he can knock them all out. Which is improbable, to be sure, particularly because Edward Arnold was pretty pudgy. But as I say, he's not superhuman. At one point he's rescued by his well-trained guide dog. (I wonder if all the movies on this disc involve dogs. I'll lecha know. )

3. Old TV shows. The blind detective led me to think about "Ironside," the old wheelchair-using detective series I loved as a child. And not just because Raymond Burr was even pudgier than Edward Arnold! I discovered the first three seasons are on hulu.com … and I've been addicted to them. I realize it's totally unrealistic--the dude ends up in all kinds of places, including, say, the second floor of a two-story house, with no explanation as to how he got there. In fact, he never calls ahead to check on access, which was even more of a necessity in those days than now. And the things he's able to do with his upper body and arms make me wonder why he's not using crutches instead. But there is a ramp in his apartment/office. And he does have a lift-equipped van (a lift-equipped truck, actually, in the first two seasons). By the end of the series, a decade or more later, I think he was driving the van himself, though I don't recall any hand controls shown… Again, not the best depiction of disabilities, but I can't help loving it. Something about seeing this guy in a wheelchair living a more-or-less normal life--bossing everyone around, no less!--feels good. Or maybe it's just nostalgia.

If you have favorite disability portrayals, or other guilty pleasures you care to share, please send them to me at bmattlin@post.harvard.edu

And the verdict is in…

2011-03-24T16:58:00.000-07:00

To follow up on my previous post, Amanda Hocking, the self-published novelist who was seeking a traditional publisher, just signed with St. Martin's Press for--$2 million.

For her, it's not just about the money. (Yeah, sure.) She was tired of the demands placed upon those who self-published and self-promote.

"I do not want to spend 40 hours a week handling e-mails, formatting covers, finding editors, etc.," she's quoted as saying, in the New York Times. "Right now, being me is a full-time corporation."

Which has always been my complaint about blogging. To do it right, it's a full-time job.

Curiously, public radio's Marketplace program just did a piece about another successful self-publishing venture. This time the author seems to have launched his own publishing company to get his book out there!

His point, to summarize: self-publishing is no longer a last resort for writers. It is increasingly the first resort.

By the way, keep your fingers crossed. I'm juggling (well, agitating for) two new NPR commentaries. And my book proposal is in submission at two new houses!

***

Recent Observations & Random Thoughts about Book Publishing

2011-03-22T13:24:00.000-07:00

The current issue of the New Yorker magazine has a funny cartoon I can relate to: a child looks up from her computer at her puzzled father and explains, "I'm not wasting my life online--I'm building my brand." (March 28, 2011, p. 96.)

For many of us, that's what it seems to have come to. Or is supposed to come to. We're supposed to go online to build our brand identity, our public persona, our following, our platform.

If that seems utterly ridiculous, that's because it probably is. But then again, just the other day came a story about a young woman who has self-published a number of sci-fi novels with such great success--entirely through online branding and promotion--that she's on the brink of signing a contract with a traditional publisher for, at minimum, $1 million.

Is it any wonder folks like me are scratching our heads? And I shampooed just this morning! (OK, I don't really scratch my own head, but don't be such a stickler!) What does it take to get a new author out there?

No one says it should be easy. After all, nobody invited us to the party. We came on our own. And as everybody knows, books are a dying art anyway.

Some of us are hooked on the idea nevertheless.

Not that we are all voracious readers. In fact, I've always felt that I'm a particularly hard-to-please reader. I'm not one to consume books in big hungry gulps. I read slowly, thoughtfully, carefully. I easily get bored. I don't mean I need to read thrillers, because they can be pretty boring too, if they're not well written.

For me, I guess it has something to do with the language and the thoughts and feelings behind it. Hard to say exactly.

But this impatience or persnicketiness makes me want to write the kind of book I would want to read and haven't found yet. So I decided to create it myself.

As one writing pal recently observed, though, the writer's life is often lived within one's own head. And if you want to be read, you basically want others to live within your head too.

So I guess it takes a lot of gall or self-confidence or something to assume anybody else would want to live in your head.

Or to put it another way, you don't have to be crazy about books to want to be a writer. You just have to be crazy.

New Yorker 3-28-11, p. 96

***

Anti-Smoking's Monsters

2011-03-15T18:24:00.000-07:00

Here's a column that never got printed or aired –

A recent Public Service Announcement on TV features a girl of about 12 lighting up a cigarette and then morphing into a wheezing, raspy-voiced woman with a hole in her throat.

Disturbing, yes. But for me, the real problem is the woman at the end looks and sounds an awful lot like me. And I've never smoked.

I'm a lifelong wheelchair user because of an inborn neuromuscular weakness called spinal muscular atrophy. Which, among other things, makes me especially susceptible to breathing difficulties.

The ad I'm referring to comes from California's anti-smoking effort, but similar ones appear elsewhere. No doubt their messages are clear and effective. And nobody is a stronger supporter of the cause than I am. But when I see them, I can't help feeling these images are a public DISservice to people like me because they exploit people's fear of disabilities.

I'm sure those involved mean no harm. They simply want to get their stories out there. The actress with the tracheotomy hole, Debi Austin, for example, says she likes to scare people about smoking. She's made a kind of career of it. But why choose this particular method for imparting this important message? Why not X-rays of cigarette-blackened lungs, say, or gravestones? Instead, these commercials paint severe physical disability as your worst nightmare. A fate worse than death itself.

It's not just the lung-cancer brigade that does it. An anti-drunk-driving ad several years ago showed a young man in a wheelchair as a similarly frightening symbol of the dire consequences of carelessness, stupidity, or hubris. Like Dorian Gray's portrait, these images reflect remorse, or punishment – horror stories even more real than the witches and goblins of old fairy tales, which were created to teach children not to talk to strangers or venture into shadowy places without adult supervision.

Yes, people with physical deformities have been exploited as cautionary totems for a long time. But aren't we supposed to be more enlightened and inclusive nowadays?

Don't get me wrong. I don't want to ban cautionary PSAs. Cigarettes are especially bad for those of us with breathing difficulties, who can suffer terribly just from being in the same room as a smoker. But that doesn't justify frightening kids away from people who look and/or function differently, just to educate them about very real dangers.

My two daughters learned Cigarettes Are Bad before they learned to ride a bike! There ARE ways. The old "this is your brain on drugs" ad taught a similar lesson without depicting drug users as grotesque creatures to shun and avoid.

So I'm hopeful. When I was a kid, in the 1960s and 70s, you didn't see mixed-race families on TV. Things can and do improve. Perhaps when my kids are my age, we'll recognize that real people – with warts and all – shouldn't induce fear. In fact, sometimes the most dangerous threats are the ones that aren't unattractive.

Hey! There's a message I could support! That would be a real Public Service.

###

Like Seinfeld, It's Really About Nothing…

2011-03-06T11:52:00.000-08:00

I have learned something surprising (to me at least) about teenage girls.

They talk about breasts--and breast SIZES--even more than young teenage boys!

Who's got big ones. Who's got small ones. Who thinks she does but doesn't. And so forth.

Which I had thought was impossible. Really. I mean, teenage BOYS talk and think and giggle and dream about--well, you know. Am I right, dudes?

But girls do too? Yup. Girls do, too. Even more so.

Plus, young women even use what I used to think of as slang-ish terms not suitable for so-called "mixed company"--primarily "boobs"!

Is it a sign of the times? Or was it ever so?

Of course, I never had sisters. Now I have two daughters. Teenage daughters. So I'm coming to understand many, many, MANY things I never did before.

I relate all this not only to improve my Google scores (and apologies for disappointing you porn-seekers), nor to demonstrate that I am now--in my advanced state of maturity--actually able to say the word "breasts" with a straight face, more or less.

I say all this as an example of Things I've Been Learning About. The advantages of the passage of years … the knowledge--dare I say wisdom?--that comes with age.

Speaking of the passage of time, I've been off-line for several weeks. I've had deadlines, then got behind. So I became a complete working stiff. Doing nothing all day every day including weekends but work on the work.

When this happens, I become like a bricklayer. A factory. Absolutely no solitaire. No crosswords. No Facebook. Hardly read the newspaper online.

But now, that is past. At least for the moment. Deadlines are met. I have others, but they seem doable so far. I'm back among the living.

Yet I find that's not as automatic an adjustment as one might suppose. It requires a somewhat conscious effort. Call it decompression. You know:

Reading and answering old e-mail.
Remembering to do the things I like, the pleasant distractions. Such as reading books & the paper.
Reacquainting myself with my literary side.
Getting back to my book-in-progress.
Coming up with new ideas for articles and essays.
And of course, catching up with my online pals.

Which reminds me: I received an e-mail from someone who recently posted a blog about how to interview counselors and psychotherapists. An interesting idea. There IS a glut of social workers and licensed counselors and such, after all, at least in my neighborhood. So one can and should be choosy. Why not interview a therapist as you would a gardner or housekeeper, to decide if he or she is the right one for you?

Not sure why the blogger contacted me or felt there was an overlap in our interests or audience. Maybe I was just on a list. But, hey, the Web is for networking, right? For building community. For overthrowing tyrants. Whatever.

So here's the link. If you go there, tell 'em I sent you.

More publishing news soon, I hope. Meanwhile, happy Mardi Gras!

***

On platforms and prisons

2011-02-07T12:40:00.000-08:00

Since I'm writing a memoir, I try to keep up on memoirs.

Lately, I've been reading Ari Steinberg's recently released Running the Books: The Adventures of an Accidental Prison Librarian . A really good read. Funny, moving, sharply observed, energetic, and ripe for a TV spinoff.

I recommend it.

I was put on to the book by a friend. This same source told me that a TV deal is brewing (it's also on Steinberg's Facebook page). Which seems a natural, since it's basically a fish-out-of-water scenario.

In brief: A recent Harvard grad from an Orthodox Jewish family ends up taking a job as librarian and English teacher in a Boston-area prison. A true story.

It's full of characters with kooky nicknames and outsized personalities. Inmates and prison guards alike. A mix of races and types. Pimp jokes galore! And lots of wry observations about how life on the inside often resembles life on the outside, and vice versa. Except when it doesn't.

Here's the thing: It's Steinberg's first book. Before publication, he had a few clips in the Boston Globe, apparently. That's about it. No "platform," as far as I can tell. That is, no proven audience. No following. No guaranteed sales.

Once he got the book deal, however, his byline began appearing on the DailyBeast, in The New York Times Sunday Magazine, and elsewhere.

So the question on my (jealous?) mind is, how did this guy get a book deal when I can't?

In fairness, this book IS well written. I concede that it may be a much easier read than mine. Yet it also seems, well, fairly unimportant … an amusing, occasionally thought-provoking entertainment … a diversion. To me, it's not especially deep. It's a small story. Unusual, to be sure, and offbeat, but ultimately pretty safe territory.

When it comes to the vagaries of publishing and personal tastes, most people would just shrug. Still, I wonder.

Despite this book's breezy sheen, it's a memoir, not a novel. Though less gritty, it reminds me a little of James Frey's A Million Little Pieces, a book I liked, actually. As you might recall, that's the one that caused a controversy when it was revealed the author made up most of the supposedly true tale.

I'm not saying Running the Books is a work of fiction disguised as a memoir--though I do notice it's the same publisher as Pieces', Doubleday's Nan Talese imprint. By the way, when I contacted the house about my memoir-in-progress a while back, I was politely told mine "would not be a good fit for our list. We publish only literary fiction and narrative nonfiction, and your memoir sounds much too mainstream…"

These things always baffle me. Doesn't "mainstream" mean that it suits a lot of people, i.e., readers? And isn't that what having a "platform" is supposed to mean, too--that you'll have lots of readers?

Speaking of readers, you should know that I've had about 50 pre-orders for my unfinished book. Which is great! Thank you, all!

But as ever, we need more to put this over. A lot more.

Maybe it's true that there's no pleasing me!

Part 40 of "Miracle Boy": Join the crusade!

2011-02-02T09:32:00.000-08:00

Over the past few days, I've been Twittering (tweeting?) excerpts from favorite rejection letters of the past.

Why?

Gosh, I'm glad you asked!

I do this not to elicit pity. Let's make that clear from the get-go.

Rather, I'm posting the rejects because…

1) I think they're funny, with their pretentious self-importance, the way they struggle to say "no" ever so humbly and graciously (they never "reject", they "pass");

2) they illustrate the overarching, vexing conundrum--namely, What the hell do these publishing gatekeepers want anyway? Or: Why is it so hard to get my book published?

I'm not alone in this. I know many, many struggling writers share a similar pain.

Some of whom no doubt suck. But many of whom are worthy.

I contend that publishers and agents often don't really know what they're talking about. To be fair, they're in a tough spot. Publishing is a profession both noble and storied. In that, it's a lot like the dinosaurs. Grand, but probably on the way out.

Look, many of these people want to be instrumental in putting great works out there but feel constrained by the bottom line. So they contort themselves in amusing ways trying to justify their existence.

There is a paucity of and desperate need for risk-taking. Or something like that.

Let's face it: You've read excerpts from my memoir (a new piece of which follows). My potential market would seem pretty vast: NPR is reportedly broadcast on 900 U.S. radio stations, transmitted to more than 150 other countries via satellite, and heard by countless more over the Internet; Americans with disabilities number some 50 million, not to mention their families and the professionals who serve them (one group, Friends of Spinal Muscular Atrophy, boasts 70,000 members!); the Harvard community is pretty sizable; and even readers of the financial magazines to which I contribute should figure into the mix.

So again I ask, What more do these people want?

Speaking of more, I'll post more rejection notes soon. Meanwhile, here is more MIRACLE BOY.

***

When time comes for me to take the S.A.T., Mother—as I've taken to calling her, to show my maturity—gets me tutored. She knows I haven't had Alec's academic training. Mom has become happier, except for the weekends of chemo- and radiation-induced nausea, during which she hides herself in her bedroom. She's become an item with a man named Bob, another writer and Harvard grad, like Dad. She's also working full-time at a small publishing house. Though she complains that it doesn't pay much, she insists she enjoys the camaraderie and intellectual stimulation. She's even trying to write her own book about having cancer. She says when it's published she'll take us to Europe.

For her, seeing me grow up and managing a degree of independence is a relief and a joy, she says. As if she doesn't want to leave this world worrying about me.

She doesn't even get mad when I tell her I was smoking with friends in the Park. I think she's just glad I have friends, have enough autonomy to be a little naughty. Fitting in has always been important to her. Being well socialized. Maybe it's a case of boys will be boys. But I knew she would feel that way, which is why I told her. I was almost showing off, like smoking with the guys was a badge of acceptance I had achieved.

It's very nice that Mother and I now have this kind of understanding and honesty between us. I'm glad I didn't "divorce" her and move to Stamford. The shrink knew what he was talking about!

When I at last take the S.A.T., Mother makes sure a proctor goes over my answer bubbles. I'm able to handle a regular pencil (or lightweight pen) and paper pretty well, but she's worried I don't press hard enough to make my answers register.

Soon all such standardized tests will be required to make accommodations like that for students like me. But at the time, we have to take accommodations into our own hands.

###

That's all for now! I need to write more. I have outlined the rest of the story, but I'll spare you that. Leave some suspense. From now on, let's talk about what we need to do to get this thing published. Really published. Old-school-style.

Hope you'll keep riding with me...

Part 39 of "Miracle Boy"

2011-01-29T13:26:00.000-08:00

In Sunday's New York Times Book Review, a rant about how there are too many memoirs complains that we as a culture are obsessively over-sharing personal yet uninteresting details.

Puh-lease!

It may be true, but the reviewer unfairly blames the memoirists themselves. He should blame the publishers.

To me, the more important question is: Why do so many ho-hum memoirs get published when really good, important ones (like mine) go wanting?

And here's a soupçon more:

***

When I return to high school, it's late-October. The weather has turned chilly and gray. The kids are already settled into a new routine, but there's little change from last year. It's the same teacher, Ekkehard Piening; the same kids—there is only one class per grade—and, at Steiner, the routine scarcely varies from year to year or, I suspect, generation to generation.

To my surprise, I'm greeted by an abundance of bonhomie. The essay I dictated to Mom about my hospital experience has appeared in the school paper, and my words worked their magic!

I have to wear the upper-body cast, which protrudes from my shirt, but I have no shame about it and the kids are accepting. At recess I have someone tip my wheelchair back against the wall to ease the pressure on my spine—doctor's orders—and even that goes smoothly. Plus my terrific attendant, Kenny, decides to stay on, despite the four-month hiatus. He doesn't stay with me at school but takes me there and back every day and works late when Mom goes out at night. A medical student on leave, he's smart and we talk about everything. He becomes the nice big brother I never had.

I begin to see how important the quality of my attendant is to my very quality of life.

Every second weekend I visit Stamford, where Dad's my attendant. Jeff is growing up, which is fun to see, but I have no friends and nothing to do there and it's boring. My friends have become very important to me.

With each year of high school my roster of friends increases. On warm afternoons and evenings we hang out in Central Park or on the museum steps—either the Metropolitan or the Natural History, depending on which side of the Park we're on. We drink Budweiser and smoke cigarettes, though I don't inhale. Most of the guys smoke pot. It makes me a little nervous when they're pushing my wheelchair over the potholes and bumps, but I never let on.

At school, one of my friends, Nanci, remembers my penchant for cartooning and wants a drawing of a shirtless Robert Plant, based on a magazine picture she cherishes. Flattered, I take special care on the important details, which doesn't go unnoticed. She squeals in delight when I present her with my penciled masterpiece. "Look—he even got the bulge in his jeans!"

Alec, still the big brain, aces his S.A.T. and will probably go to Harvard, like Dad. I don't want to go that route or be like that. I've learned to stop being a dork, trying to impress others with my intellectual chops, which I'm not sure I have anyway. The new Ben goes with the flow, lets the good times roll, and never forgets that misery and suffering are as close as my shadow.

Part 38 of "Miracle Boy"

2011-01-27T15:54:00.000-08:00

Not surprisingly, perhaps, but I've learned something new about Facebook.

If you want to increase your list of "friends" geometrically, seek out writers.

Not only will they accept your friending invite; they'll intimidate the heck out of you when you realize they already have thousands and thousands of FB friends!

More to the point, really: now I understand why.

It's this "platform" business.

Sure, writing is a lonely career. That might explain, oh, say, 150 FB friends. But thousands? That's building a constituency!

Now, my sources say this "you need a bigger platform" business is just that. THE business, as in BS. It's become a common excuse.

The truth, I'm told, is that nobody--other than the John Grishams of this world and their ilk--has a platform. At least not in the sense of thousands of readers guaranteed.

What's more, I do have people like you, dear reader. Plus I am part of various associations that boast tens of thousands of members. So my potential market is pretty huge, thank you very much.

More about the woes of getting published next time I write. Meanwhile, another installment, one of the final few…

… Worst, worst of all: how the nurses tease him. Loudly. Every few days. Whenever they discover wet semen on his sheets, his catheter blocked or popped off.

"Heeha!" the loudest one laughs. "What you been doin'?! You gotta cut that out! I ain't cleanin' up this mess no mo'! You a bad boy!"

I vow never again to be jealous of the cool, popular boys at school or resent others' mobility and freedom. I've come to realize that I could have a lot less mobility and freedom than I do. I will remember how lucky I am. I'll put the inimical, tough-guy Ben to rest forever when I return to the land of the living, and always try to appreciate my life just as it is. As long as it's far away from here or any place like it.

I make this vow privately and never tell anyone. But it's dead serious. The most religious experience I think I'll ever have. A promise I make to God. "Let me out of here, and I'll never forget."
On Labor Day weekend, Barbara and Dad visit with their new baby, Jeff. Barbara barbecues a chicken in Happydale's outdoor area. My bed is rolled outside, too. We all try to pretend it's pleasant and normal.

***

Life, however compromised, settles into a pattern.

Back in New York, the school year is starting without me. One afternoon in early-September, Mom brings a manila envelope stuffed with my classmates' good wishes. I know it was an assignment from Mr. Penis, but I'm moved nevertheless and reread every note. I call it my fan mail, and still have the package today.

In response, lying there like a slab, I ask Mom to take dictation. I want to write a sort of thank-you to my class, or really an explanation of what I've been going through—to head off rumors, excess sympathy and most of all awkward silences upon my return.

I want to submit it to the school newspaper. Still figuring humor is the key to improving my social standing, I gave it the sarcastic title What I Did Over My Summer Vacation, and begin it with, "Have you ever wondered how dirt gets on the ceiling?"—a reference to the boredom of lying supine day after day. I end with, "Try not to be too jealous."

Toward the end of my stay, I gather sufficient courage to ask one of the volunteer teaching aids if she'd like to go to a movie "when I'm back on the outside." She's a pretty, dark-haired high-school girl with a warm smile, and says yeah, sure, but I'm not confident she means it and I wonder how I'd follow through anyway since she lives in Westchester. Still, it's good practice, I figure, since I didn't do so well with my Star Wars date.

***

(from http://www.blythedale.org/-- which has an amazing resemblance to Happydale)

When at last I'm returned to Special Surgery, I'm put in a regular room in pediatrics with one other boy and no individual Trinitron, just one big set for the room. One evening he asks me what it's like to be a teenager. He must be about twelve. I don't know what to answer. Me, a teenager? It's then I realize my lengthy incarceration has made me older in some indefinable way, or at least feel older.

The halo and trach are removed and the cast cut back, though I must continue wearing what's left, which is most of it, for several more months. Still, the end of my hospitalization is near! After four months that were supposed to have been six.

I'm truly lucky.

You see, the odd assortment of suffering I witnessed, especially at Happydale, will leave an indelible mark. I'll never forget Murph, my masturbating Happydale roommate. After sharing a slice of life with kids like that, I cannot be the same again. I know exactly how the other half lives, and it's not good. For those of us with severe disabilities, you can never be too safe, too well protected, because the institutional snuffing out of privacy and dignity can never feel so very far away.

I've lost a lot of weight, too, despite the Doritos—which feels good, since I was fat—and I'm taller than I was, since my back is straighter. I also now sport several long, downy tufts on my chin and will need to shave as soon as I'm released. A new man, within spitting distance of fifteen.

***

Part 37 of "Miracle Boy" and a new start

2011-01-23T11:06:00.000-08:00

Here is my next installment. Only a few more left, and then a change of direction.

You see, I think I'm moving into a pre-publication phase. Nothing definite, yet. No contracts signed. But I have an offer.

It's not an ideal offer, however. What stands between it and what I'd like to have is the same old thing--a guaranteed readership. A "platform," in publishing parlance.

Never mind the hundreds who visit here every week. They're not enough. Apparently, I need thousands.

To me, there is something funny about this. The Kardashians or Balloon Boy have a better chance of getting a book published than someone who has slaved for years, polishing prose and even doing the right things to amass an audience. Publishing pieces in major newspapers and magazines. Securing a semi-regular gig on NPR. None of that matters. None of that matters because I'm still an unknown in the book world.

Which inspires a new idea!

In the next few weeks, when I run out of memoir installments, I'm going to begin a new series about the aggravations of trying to get published. I'll post some funny rejection letters, and invite readers to share their horror stories, too.

Think of it as Shit My Publishers Say.

In keeping with the promise of this blog, I will not rant or moan or mutter bitterly. I'm going to try to accentuate the humorous side of this absurd pursuit.

It's absurd because so many of us are drawn to it, and yet--especially these days--it's completely impractical. As someone in the biz recently said to me, NO ONE IS BUYING BOOKS! Everybody talks about how important it is to have a platform, but nobody really does because nobody can guarantee book sales these days!

You think it's hard out there for a pimp? Imagine being a publisher! Or, for that matter, an author.

I hope you'll join in my planned new format, and help me in this experimental strategy. It's a strategy to gain attention and a bigger following, and embarrass the publishing community into letting a few of us slip through its golden gateways.

But first, the final few installments of MIRACLE BOY –

***

It's soon apparent that the staff here is less well trained than the hospital crew I've grown used to; they're rougher, sloppier. My trach is never cleaned. I'm not bathed as thoroughly, if at all. And the place doesn't have wedge pillows (unless, I later learn, you place a special order). Plus it's harder for my parents to visit, being out in the suburbs. Within two days I'm begging for a transfer.

Can't I stay in the city? Or perhaps be cared for at home? Dad calls Dr. Levine. My request is denied. There's no extra room at city hospitals. I need to stay here, to recover slowly and be professionally monitored.

Shit!

I'll have to make the best of it. Imagine I've been captured by the Gamesters of Triskelion … Oops—I forgot. No Star Trek.

Happydale has a sort of school I'm rolled to every day in my hospital bed, even though it's summer. One thing I like about it is it has an extensive tape library. Through headphones, I listen to articles about politics, science, technology. Soon I have a volunteer—a groovy dude dressed in denim, with big dark glasses and a shaggy haircut, who smells of cigarettes, which is a scent I like, and calls me "buddy"—to read to me from The Pickwick Papers, my assigned summer reading (it's not in the audio library).

When Mom visits, she brings food—kosher London broil and baked chicken, personal favorites, which aren't on the establishment's menu. I keep a stash of Doritos by my bedside, which, believe it or not, is marked kosher. I need someone to feed me, since I'm lying down. I learn it's easier to swallow when rolled on one side.

I have to be rolled like a log, because the metal halo is now attached to a plaster cast that covers my torso and part of one leg. The leg pins have been removed, but my neck and, to a degree, hips are immobilized.

Because of being so stationary, I take physical therapy three times a week. Which reminds me of the pointless exercises of my early childhood, except this time I'm at an age to enjoy the attentions of my therapist, a really attractive brunette. As she flexes my knees and elbows, and orders me to work my fingers by buttoning and unbuttoning a raggedy old shirt, I only grumble slightly and, I hope, with the utmost charm.

The solitary television set in my room, mounted high, is on pretty much all the time. It's the summer of the Son of Sam killer. Elvis Presley dies. A new actress will replace Farrah on Charlie's Angels, and I enjoy reading in People magazine about her measurements (Cheryl Ladd's bust is even bigger than Farrah's!). But the weight of all this, the impact, is the dour realization that the world outside these institutional walls goes on.

One of my cellmates, er, roommates, with whom I have a begrudging affinity because he likes the Beatles and covets my tape collection, wonders aloud about the meaning of Elvis' demise. "Does it mean Elton John is now the king of pop? They always called him the prince, so—"

Try as I might, I can't block out all of it. One sound in particular will haunt me for years to come. It involves poor Murph, another of my roommates, a young man who is rumored to have lived at Happydale most of his seventeen years! It's said he could go home but his family doesn't want him … it's said they visit only on Christmas, Easter and maybe his birthday. I don't know if any of this is true, but he never leaves his bed for a wheelchair (then again, neither do I), and his infrequent speech is hopelessly garbled, probably from cerebral palsy or a brain injury. You don't need to understand his words to hear the urgency, anger, frustration, sorrow.

Yet worst of all is how the nurses tease him . . .

Part 36 of "Miracle Boy"

2011-01-16T13:00:00.000-08:00

Welcome, new readers! (You know who you are).

Anybody else in the disability community irritated by those anti-smoking commercials that feature gasping, wheezing, dried-out old folks as examples of what smoking can do to you--a fate worse than death?

I know they're for a good cause and all, so I hesitate to object. But to me the frightful images are offensive!

I mean, some of us look like that without having ever smoked … right? Well, without inhaling, anyway. *Wink*

Maybe not me personally, but you get the idea.

At any rate, that's the germ of a new idea for an NPR commentary. We'll keep you posted.

Meanwhile, here's more of MIRACLE BOY.

****

That's okay. I'm comfortable.

After a week I'm still on an I.V., though. And a large, noisy ventilator, which I hadn't noticed before. Tubes everywhere.

God knows what all!

Machines beeping and buzzing … It's amazing I can sleep at all, and on my back yet! They're not all my machines, I gradually perceive. Some belong to my neighbors in the I.C.U. We don't interact. Maybe the families do, but not me. Mom and Dad might say a word to my roommates' visitors, but I pretend I'm in my own world.

One night the lights go off and on again. Nurses are suddenly swarming all around me. The head nurse is called in, though she's supposed to be off-duty. It's a blackout, they say. Indeed, the nursing staff is jabbering about it. I vaguely remember the blackout of '65. I was not yet three. It seemed Dad would never come home from the office. But he did and all was well.

So I'm not worried now. But my nurses are. Very. They pump a sort of football-shaped manual respirator into my trach. They check my pulse repeatedly. They check blood gases, which involves a painful needle into the muscles of my groin. They're relieved to discover my oxygen level is fine. The hospital has its own power generator, and soon my respirator is on again. It breathes for me and I become lazy. But I insist I'm fine. I'm not lightheaded. I'm not short of breath. At least I think I'm insisting. Mostly I'm smiling.

Soon the ventilator is removed completely, and I breathe on my own. I'm fine. Yes, fine. Always fine.

At times I'm even allowed to roll onto my belly, propped on a special wedge-shaped pillow. As long as my spine is kept in alignment, it's okay. With the pillow wedge, I can place my notebook down on the mattress and do a little writing.

One of my biggest concerns remains: Can I still touch my dick now that my back's straightened? (With my hand, that is—"reach myself," as Dad might put it.)

Eureka! I can! I can!

When the nurses remove the surgical catheter and wrap a soft, loose cloth diaper around my crotch, it enhances the experience!

***

After two months at Special Surgery, I'm transferred to a convalescent facility in Westchester County. I've been so cloistered, the glimpses of New York in August passing through the ambulance windows blow my mind. The city looks beautiful … absolutely mesmerizing and inspiring. I feel like a tourist in my own town!

A tourist who's strapped to a gurney, that is.

Sadly, the euphoria is temporary. Soon we're in the suburbs. By and by we arrive at Happydale, the institution I'll call home for the next three months. The very name conjures a shadow-gray sanitarium from an old horror movie.

I'm rolled inside and eventually parked in a large room with pale-blue walls and seven other kids. It's a downgrade from the I.C.U. Only one TV, for starters.

One of my new roommates, a young Black boy in pressed blue jeans and a tucked-in button shirt with yellow stripes, greets Dad, who is accompanying me on the trip, with a stagy formal bow. "Hello, my good man!" the boy says.

This kid is so animated and not post-op-like and, well, on his feet … the nettling question for me is, why am I in the same place he is?

In time, I learn the bitter truth. But for now, something else seems evident:

I am in the nuthouse!

###

Part 35 of "Miracle Boy"

2011-01-09T17:46:00.000-08:00

Thanks to all of you who responded to my request last week for examples of offensive, exploitative docudrama-slash-Reality TV portrayals of people with disabilities.

Here's the short list of what I've come up with:

1) "The Eight Limbed Boy," "Manar's Story: Born with Two Heads," and something called "My Shocking Story" that featured conjoined twins called "human spiders." (I kid you not!) All on FitTV.

2) "Born Without A Face: Five Years Later," about a child with a rare condition that causes bones not to develop. On FitTV.

3) "Mystery Diagnosis" has reappeared, from the late Discovery Health, on the new Oprah Winfrey Network. ... Recent episodes featured "the toddler that stopped walking," "the girl with no bowel," "the boy who only hopped," and "the toddler that went through puberty," to name a few.

4) FitTV also has several series about psychological disabilities ("Addicted to Food" & "Help! I'm A Hoarder)" and unusual pregnancies, which wouldn't be so bad except that "I'm Pregnant And…" frequently completes the sentence with "bipolar" or "may be having a dwarf" and similar disability-related terms.

5) The Learning Channel, another Discovery property, features "The Little Couple," which follows a couple of newlyweds for no obvious reason except they happen to be People of Short Stature a.k.a. Little People!

6) The problem is not unique to cable. A recent installment of ABC's 20/20 highlighted an amputee weightlifter … simply as an example of someone who defied expectations, I guess … which is another flavor of freak-show.

I welcome your reactions. For my take on these and other examples, you'll have to wait for my NPR commentary. No idea when that will be, though. My editor is working on getting clips from these programs to illustrate my points.

Meanwhile, here's the next installment of MIRACLE BOY…

The Recovery Room.

A tube is inserted in my nose. Maybe it's been there all day but I'm just now feeling it. It makes it hard to swallow my own saliva.

The room is dark and crowded. Lots of people on lots of beds, countless machines beeping and humming.

No TVs.

I float in and out of sleep. Well, of consciousness. I'm not permitted to see my parents until morning. I'm not sure I'll make it till morning.

I hear someone in another bed—an old woman, it sounds like—discussing the difference between "mottled" and "modeled." She's trying to explain a mark or a feeling on her skin and the nurse isn't getting it. I want to help. I'm good at explaining. Mom always says words are my strongest tool, and I have learned time and again it is so.

Respect for the word ...

But I can't help this poor woman across the Recovery Room. I can't get up and I can't speak. This must be what it feels like to be buried alive, I think.

I try to memorize everything that's going on around me, so I can put it in words later, in my notebook, but without my glasses I can't see and without my brain fully switched on I have a hard time stringing together pairs of sentences in my head. Forget paragraphs. Later, I think. I will write all this later.

But first I have to stop feeling like I've been run over by a Mack truck. Whatever a Mack truck is exactly ...

Big Mac. Mack the Knife. Maybe that's better. Stabbed by Mack the Knife.

When morning comes, I'm thrilled to see light. Whether it's the fluorescent bulbs outside the Recovery Room or the summer sun shining through the windows, I can't be certain. Either way it's bright and new and I'm rolled out of the recovery room and I'm okay. Mom and Dad are there—here, coming up to my rolling bed. I'm transferred to another bed, one in the I.C.U., which is a big room with five or six patients near the nurse's station. Each bed has its own little Sony Trinitron color TV. Feels almost like being home again.

Dr. Levine visits. He says he was able to do the two parts of the spinal fusion at once, in that one surgery. We're ahead of schedule. "But your bones are like eggshells," he cautions. "You need more milk. More calcium."

Later I'm given a small plastic plug to close off the trach so I can talk. It doesn't come to me right away, and I struggle and gasp until at last I can speak in small increments.

Whenever I feel pain, which isn't often, I'm given a dose of Demerol in my I.V. It's the most wonderful sensation I've ever experienced—a luscious, tingly warmth that spreads within until I fall blissfully asleep. Soon I have to cut back on the doses; requests for more receive a "can you wait a bit longer?" or outright denial.

***

Part 34 of "Miracle Boy"

2011-01-03T10:25:00.000-08:00

Happy New Year! Crushing deadlines safely behind me, I'm ready to re-begin.

But first…

I'm looking for suggestions. Been working on a new piece for NPR about media images of disability--specifically, the way certain soft-news and reality TV programs portray people with disabilities as scientific oddities or "amazing but true" objects of medical curiosity--and I could really use your help.

You see, the examples I originally came up with were all from the Discovery Health channel, which ceased broadcasting at the end of the year. So I need new examples.

If you encounter any, please e-mail me pronto. The best way to reach me is at bmattlin@earthlink.net

One more thought: Is it just me, or has the time finally come to call the year "twenty-" etc. instead of "two-thousand-" etc.? That is, can we call the new year "twenty-eleven," not "two-thousand-eleven"?

It's a lot simpler, at least to my ear.

Actually, this has been a pet peeve of mine for some time now. I've been waiting for the right moment to happen. I've wondered, when would the changeover occur?

At last, a possible answer: Now!

Why now? Let's face it, "eleven" is just too long a word. It has three syllables!. So altogether, "two-thousand-eleven" is six syllables. "Twenty-eleven," on the other hand, has only five. See? Simpler.

One thing, at least, is clear: I've been on vacation too long.

MIRACLE BOY GROWS UP, continued

In the months that follow, I feel I'm making a little history myself—or at least approaching a Big Event. The hospital days in April were just preliminary. The Big Event is this summer's surgery.

No one has ever spent a summer in a hospital like I'm going to spend the summer in the hospital. There will be a series of operations culminating in a spinal fusion—which will attach pieces of metal called Harrington Rods to my pretzel-like spine. The rods won't make me completely straight but significantly straighter, which is the best we can hope for. I'll be in the hospital for three or four months, with a two-month interval at a rehabilitation facility. In all, six months under institutional medical care. Summer and fall. Or so goes the plan.

It's enough to make an ordinary teenager crumble, perhaps, but not me. This is my big battle, the travail I must endure to achieve stature, literally. I'm Ben-Hur facing the Roman galley ship. If he can row for three years, I can lie in an institutional bed for six months. In characteristic fashion, macho fantasies come to my rescue.

At Mom's urging, I start scribbling my fears and expectations in a notebook. I will keep a journal before, during and after. At the very least it gives me something to do with my pent-up energies, at once a focus and a distraction.

I began wondering what I might actually lose from gaining a straighter back, and experiment in the bathtub with auto-fellatio.

Contact!

A dirty little secret of the extremely scoliotic! Yet I come away without a clear understanding of what all the fuss is about blow jobs.

When school's out, in early-June, I have a couple of weeks free and arrange to see Star Wars with a girl from school, my first half-assed attempt at a date. We get our signals crossed, however, and I become impatient waiting for her to call back. I end up seeing it alone and don't enjoy it. My pre-hospital time feels too precious to waste on waiting around for the phone to ring. Sorry, babe.

Finally, I am again admitted to a private room in pediatrics. For the first few days, more tedious tests—X-rays, blood panels, whatever. Every time I pee it's measured, and when I don't a nurse asks me if I want to. They expect you to piss every hour! Then I get a preview of my coming traction, so to speak—a system to stretch my spine mechanically over the course of a week before the rods are actually inserted. It sounds laughably primitive, but Dr. Levine insists it's necessary and he's done it hundreds of times. Or I should say, he's done it to hundreds of other patients. He even produces a past patient as a sort of reference, I suppose, and to cheer me up and reassure me that this is not the end of the world. Thanks, Doc.

I'm awake when Levine drills holes into my skull—the first step of traction. I've been injected with a local anesthetic, and I feel nothing. Then a heavy metal ring is installed on my head—actually screwed into my cranium. They call it a halo. But aren't halos supposed to be light as air, luminous and ethereal? This is about as light as an iron.

A matching set of metal pins is installed near my knees. Again, "pins" is a misnomer. Pins are small and narrow. These are not. These hurt like hell. They are metal dowels that, like the halo, go through the bone; they stick out on either side. I complain for days about my right knee in particular. It throbs so much Dr. Levine decides to redo that portion. He moves the pin a centimeter or two. It's still sensitive to the touch but less painful most of the time.

Cords are tied onto the halo and leg pins, attached to pulleys with a weight at the other end. Yes, I'm being drawn and quartered! I'm lying on my back all the time now. My upper body may be elevated slightly, but the idea is to keep my spine straight. This goes on for about ten days, during which it's impossible to keep my journal. I'm again glad for the Sony Trinitron. I think I learn every episode of the Mary Tyler Moore Show by heart.

I try dictating to a small tape recorder, but it's not the same. I listen to music cassettes through an earphone, mostly Beatles. Which is not in keeping with the zeitgiest, of course, but since I was too young to fully appreciate the Beatles in their time it's not exactly nostalgia either. Besides, sometimes the coolest thing to do is not follow what everybody else is doing. I'm beginning to learn that.

In any case, no one from school will know.

When Mom and Dad visit—usually on alternate days—they bring me more Beatles cassettes and other music I request, such as Aerosmith, which I'm just starting to get into. Alec is in England and France with a high-school tour group. He promises to bring back British versions of Beatles LPs.

The day of the big surgery, Mom and Dad appear together very early in the morning, for pre-op. I'm sedated. It doesn't make me sleepy. It makes me giddy. As I'm being rolled off toward the operating room, I tell my parents, "I have one question. Before he cuts me open, I need to know if he's a kosher butcher!"

They find this hysterically funny. Dad laughs like a seal. He pats my foot, which is under several layers of sheets. He's always patting me. Mom shakes her head and says how very funny I am. Grace under pressure, she says. Not really. It's more a burnished reflex. Make light of a difficult situation. Find the humorous side of it. Put people at ease.

The lights in the O.R. are very bright. I want sunglasses. Instead, I meet the anesthesiologist. A face behind a surgical mask. He asks me to count backward from one-hundred. I get to ninety-six.

When I wake up, I'm being lifted by a gang of a half-dozen or more in surgical outfits. Lifted from one bed to another. There's a pain in my lower back, near my waist. I try to say "My waist! My waist!" but no words come out. I have a tracheostomy. Dr. Levine had explained this. I was likely to come out of surgery with a buildup of fluids in my lungs, and since I'm unable to cough, a tracheostomy will allow the doctors to suction out the gunk from my lungs. So for now I cannot speak.

Dr. Levine sees that I'm trying to talk. He tells the others to stop. He leans over me, and I can make out his rosy-cheeked face, his red curly hair, his clownish bow tie. I don't have my glasses on, but these things are unmistakable. "What is it? What're you trying to say?"

I like Dr. Levine for trying to understand. Yet I'm too dazed to think up an alternate explanation, a suitable vocabulary. I keep mouthing My waist, my waist. Finally he gets it. He feels under me, around my waist, but finds nothing wrong. "See if it gets better. It should go away." (It does, but I don't notice when.)

The next twelve hours are the most horrifying.

***

Part 33 of "Miracle Boy"

2010-12-02T17:14:00.000-08:00

Under deadline pressures, so without further ado –

***

She says she can see my room out her window, but I don't see hers.

She has a tumor removed from her ovaries. She's forty-three, scared because ovarian cancer is what killed her mother. I'm convinced she's worrying over nothing. She usually does. Mom calls her operation a "procedure." What we don't know is it'll be the first in a long series of procedures.

One afternoon, accompanied by a nurse, Mom drags her I.V. over the bridge connecting the two buildings and visits me in pediatrics. She's weak and pale but tries to be cheerful, and I do too.

We're also unaware that, that same April, disability activists are protesting at federal office buildings in ten major cities. The Rehabilitation Act of 1973 still has not been signed into law, four years after Congress passed it. Specifically, the guidelines necessary to enforce Section 504 of the Act, which bars discrimination against people with disabilities in federally funded programs, haven't been finalized. Without those guidelines, the nation's first disability-rights legislation is rendered meaningless.

Protesters believe newly installed President Carter may be sympathetic to their cause, but so far he's done nothing.

The San Francisco demonstrations are the largest. Scores of activists occupy the local headquarters of the U.S. Department of Health, Education and Welfare, the body responsible for the guidelines. They camp out for twenty-five straight days and nights, sleeping in their wheelchairs or on the floor. They share urinals, catheters and personal-care attendants, bathing in front of each other without shame—most are used to being undressed in front of others. I know the feeling.

These activists are inspired by the Black civil-rights movement, of course, but more than that, they have nothing to lose and nothing else to do. They're unemployed or, in many cases, barred from all but a handful of mainstream schools. Having benefited from the latest medical advances, they've survived crippling, once deadly, diseases and accidents to live active lives with the aid of crutches, power wheelchairs, portable ventilators, guide dogs, sign language and other modern marvels. Many don't have their own homes or families to tend to. They feel they've been patient long enough.

At the end of the month the protesters are victorious! Joseph Califano, Carter's H.E.W. secretary, finalizes the regulations and the president signs them into law. A modicum of rights, at last! Power to the people!

It will prove only the first battle of a long war, of an ongoing revolution, but it's one from which I'll personally benefit very soon. For all institutions that receive federal funds are now required to become accessible by 1980. The year I start college.

***

Part 32 of "Miracle Boy"

2010-11-24T13:43:00.000-08:00

Happy Thanksgiving to all!

I've been working on a new NPR commentary for the impending holiday season, and have set myself a personal goal of doing even more next year than I had the pleasure and privilege of doing this year. We shall see…

Meanwhile, my financial journalism continues apace (whatever that means).

And one of the three publishers passing judgment on my humble book proposal has given it a thumbs-down. Yet I shall remain hopeful about the other two. They have the new-and-improved version, which the naysayer didn't.

In other news, the excellent writer Mary Karr has come down hard on recent statements by controversial writer James Frey, author of A Million Little Pieces. Who, in New York magazine, said something recently about the blending of fiction and nonfiction in modern literature. Karr does not believe in confusing the two. "Hey Frey: if you can't tell the truth and you lack imagination to make up stories, maybe scribbling just ain't for you," she proclaimed to her Facebook fans.

She's right, of course. But honestly, memoirs like hers (Lit, Cherry, The Liars' Club), and the one I'm working on, are not biographies nor works of journalism. They should not be taken for reporting indisputable facts. A memoir is necessarily subjective--the author's version of events. Right? So what you read here is my take on what I remember … thus, it's highly filtered.

And to make it more readable, I do try to use some of the techniques of a fiction writer. So the pacing is artificial, that is, contrived as a work of art. What's included and what's left out is artificial, too, in the sense that the decisions are based on my own sense of what's relevant or interesting. But the situations depicted, and my experiences of them, are completely based on fact. I haven't made up any characters or scenes. Though, of course, anyone else who lived through these events probably has a completely different memory, interpretation, and story. Does that make sense?

Anyhow, without further ado, here's the next installment –

###

It's the autumn of 1976. Jimmy Carter is running for president against Gerald Ford. I'm convinced Carter will lose, because who would vote for a Southerner with blow-dried hair? "Shake Your Booty" by KC and the Sunshine Band is the top hit. I'm trying to be into what's happening now, and swear off talking about Star Trek as if it's real, though some of the popular disco music leaves me cold. I won't pretend I'm Chief Ironside or even the much cooler Steve McGarrett anymore. I spent last year signing "Steve" to my homework papers at Walden, such as there were homework papers at Walden.

On the other hand, I don't want to be just Wheelchair Guy either. I like having a counter identity. If I can do something else—such as make my new classmates laugh—perhaps I can go from Wheelchair Guy to Funny Wheelchair Guy and, in time, to just plain Funny Guy.

I start doodling cartoons between classes and sometimes during classes. A few weeks later, the student paper publishes one. It's a caricature of Carter, Ford and—what the hell—Nixon at a fictional debate. Nixon says, "I am not a crook." Ford says, "New York, drop dead." And Carter says, "Anybody want a peanut?"

I'm doing my best, but I'm fighting impossible odds. I'm still fat and wearing an uncomfortable back brace that makes my clothes fit funny. I take to holding my bathroom needs till I get home, on the assumption I'm too old to ask teachers for that kind of help. On occasion I have accidents, concocting clever excuses and misdirection. "I spilled my drink!" Or "What's that smell? Did my chair run through dog doo in the park?"

Soon medical imperative blows my cover. The surgery.

***

My curving spine has overpowered the pinching back brace. My weak muscles can't keep up. My back has nearly folded over itself. I look more like a beach ball than an almost-fifteen-year-old boy. And the orthopedist says the situation has become critical. Without surgery, and soon, breathing will become increasingly problematic as my body closes in against my lungs. I'll become unable to sit in a chair within five years. My parents have insisted on getting second opinions. Now three of New York's top orthopedic surgeons agree.

We pick Dr. David Levine of the Hospital for Special Surgery, which is on the Upper East Side. He seems the most responsive to questions, even from me, and I like his sunny manner. His penchant for bowties is either a plus or minus—I can't decide.

To prepare for next summer's surgery, I spend the better part of spring break in the hospital for tests. I'm given a private room in the pediatric ward. Disney characters are painted on the walls. Come on, I'm nearly fifteen!

Out my window you can see the East River. The hospital is on prime real estate! Mostly I like the small Sony Trinitron color TV on a pivoting gooseneck over the adjustable bed. I can't change channels myself, but at least I can pick what and when to watch and ask a nurse for help.

For five days I undergo a litany of tests—breathing tests, blood tests and so forth. I try to find the bright side, look at the nurses as sex objects, because that's what the cool guys at school would do, but I'm too busy taking it all in and being bored to float any pleasure.

While I'm there, Mom checks into New York Hospital, which is adjacent.

Part 31 of "Miracle Boy"

2010-11-17T11:20:00.000-08:00

I have a second chance at reinventing myself and finding happiness. Rudof Steiner starts one day later than Rippie. Why not give it a try, too? My parents agree. What I didn't realize is they never actually told Steiner about this second change of plans. They didn't have time.

At Steiner, the brouhaha soon settles down and I'm parked behind a desk at the end of the front row. Dad leaves. I struggle to learn the name of the girl on my right. She's pretty, and I figure if we're going to be neighbors we might as well be friends. The new me is as shy as the old me, however. The new me is still a work in progress.

The teacher re-begins his remarks. He's a broad-shouldered, slightly potbellied man, and his fair locks hang diagonally in a … well, a Hitleresque slant toward his bushy eyebrows. I've missed the part where he gives his name.

At lunch the other kids make a special effort to welcome me. "So what're your hobbies?" I'm asked probably six times. I become self-conscious about their solicitousness, but seize the opportunity. "Our teacher—what's his name?"

My question elicits giggles. A girl with flaming red hair and an expansive smile says, "Isn't it funny? German, I guess."

I wait. Then, in a hesitant, enchantingly soft voice, she says, "A Hard Penis." At least that's what I think she says.

I nod knowingly, or try to as best I can, betraying no embarrassment. My head doesn't actually move much, so I sort of raise and lower my eyebrows, playing it cool. I'm good at using facial expressions to my advantage.

On the third day I have a pressing question about a homework assignment. I can't raise my hand. I raise a finger, but will have to call out. Maybe I can get by simply saying "Sir." No. Too formal. I decide to be brave. Perhaps if I say it fast enough, emphasizing the initial syllable and slurring the rest, I can get by. I'm good at fooling people. "Uh, Mr. PEEEN-ih—?"

He looks over. No one chortles. It worked!

Maybe his name really is Mr. Penis.

There are a lot of funny names here. Kids called Almira and Bethea ... at least I think I have those right. I hurriedly ask when book reports are due, and we go on to a lesson in recitation. Recitation is big here. Every morning starts not with the Pledge of Allegiance but with Steiner's own Morning Verse, which I soon learn. "I look into the world, in which the sun is shining, in which stars are sparkling, where stones repose ..." The class speaks it in unison while standing up—slowly, reverentially, like some secret, ancient chant.

Very spooky.

English class begins with two passages we're supposed to memorize. "In the beginning was the word ...," Mr. Penis enunciates for us to repeat. What happened to, "In the beginning God created the heavens and the earth"? I'm in the presence of goyim, but this isn't Connecticut and they're in the minority.

Then, a few days later, comes: "Respect for the word is the first commandment in the discipline by which a man can be educated to maturity—intellectual, emotional, and moral. Respect for the word—to employ it with scrupulous care and an incorruptible heartfelt love of truth—is essential if there is to be any growth in a society or in the human race …"

I sort of like that one. I've always had respect for scrupulously employed words! I become engaged in the lesson, and soon realize this oddly named teacher and eccentric, quasi-cultish school are growing on me. I made the right choice, coming here, staying in New York. I never think about moving to Stamford again.

Mr. Penis writes the name "Dag Hammarskjold" on the board. I only know it from the plaza near the U.N. Someone then asks him to spell out his own name on the chalkboard. Thank God! Why couldn't I have done that?

He writes: EKKEHARD PIENING.

***

Part 30 of "Miracle Boy"

2010-11-08T14:56:00.000-08:00

So far, all the men at this Steiner high school wear the drab, narrow-lapelled suits of a previous generation; the two women in evidence are in navy pencil skirts and prim cream-color blouses that've seen better days as well. An odd sort of shabbiness, considering the affluent location, pervades. And not the hippy-dippy grunginess I'm used to from Walden.

My homeroom teacher—young, blondish, in a blousey gold-color dress shirt, conservative polkadot tie, and comfortable shoes—interrupts his presentation to the class when I'm at last wheeled in. "Yes? Hi! Mattlin? Are you in the right class? Ninth grade? It's just that we weren't expecting you ..."

No shit? I smile and remain silent. The other kids—roughly fifteen in all, I estimate—are staring at me from behind identical front-facing desks. (I'm relieved to notice no ties or blazers, like Walden, not like Alec's school.) Most are girls. Much whispering ensues between the teacher and the swarm of 1950s administrators and others who have gathered. The source of the confusion is apparent, to me at least. I am the cause of the commotion. I'm supposed to be in Stamford.

Yesterday, I awoke to the darkness of 5:30 AM in Dad and pregnant Barbara's West End Avenue apartment (they moved from Brooklyn several years before, when the strain of walking up two flights became too much), got in Dad's minibus-sized red Checker sedan—which had room for my motorized wheelchair, if I ducked my head—and did the long reverse-commute to Connecticut. The house they're having built in Stamford isn't finished yet, and I don't want to miss the first day at Rippowam High School.

Rippowam turns out to be a sprawling suburban campus of about a thousand students, quadruple the population of Walden's high school and about fourteen times Steiner's, spread out on a single floor. It's a public school, but it's supposed to be a good one. It's also pretty accessible. I roam from class to class in my motorized wheelchair, something I've never done before. But I get lost and my chair is slow, so I struggle to keep up. Many of the other kids already know one another ... and look different from kids I've known. Athletic? Outdoorsy? Suburban? Gentile? Something!

What's more, out the windows are trees and grass. You can hear birds, not car horns and sirens. Charlton Heston's monotone resonates in my head: "I am a stranger in a strange land."

When my latest attendant, Kenny, brings me home to Manhattan's Upper West Side that afternoon, I'm depressed with severe misgivings. "How many trees can you stand?" I shriek.

The realization: I am a city boy.

***

Part 29 of "Miracle Boy”...goes to high school

2010-11-04T10:55:00.000-07:00

Thanks to all of you who have written to me in response to this blog and other things I've done.

Thanks for voting for items below, and for my first YouTube comment.

(These humble entries are now receiving about 15 views per day, or close to 500 visitors a month. Not bad!)

My proposal is now in the hands of three or four book editors (I've lost count). I've published articles in each of the past two issues of Financial Advisor magazine, and a new one is in the works.

And NPR is awaiting my next commentary, which I'm hoping will run before the end of the year.

But of course, none of this is certain. None of it is money in the bank. Well, a little, but not much money.

In the manuscript segment that follows, we start the final chapter that's completed so far. Honestly, I'm wishing for a book contract to keep me working on it--so far, it's all been on spec--but I doubt not having one can stop me now!

Well, barring further development, here's the next installment . . . .

Dad and Barbara plan to move to a house in Stamford, Connecticut, where there will be room for the new baby. There is great excitement in the air. Barbara is pregnant! The house is being built! It's an opportunity I don't want to let pass.

I've always wanted to live in a house instead of an apartment. Besides, New York City in the mid-70s is depressing, dangerous. What's more, Mom's not as fun as Dad and Barbara, not as upbeat and adventurous. She's been struggling to find a job and a man she can stand. Only I put it in better words when I finally muster the courage to tell her I want to move out and live with them.

"Are you sure?" Mom asks. Then: "Have I been so—? No. Never mind. Um, won't you miss Alec?"

I haven't thought of that. Alec? No, I guess not.

Yet having spoken my fantasy I'm suddenly not so sure about it. Dad is able to do more with me than Mom, better at tending to my physical requirements. That much is true. Yet Mom is more emotionally supportive. Even now, she suggests I see a psychologist to discuss this.

Reluctantly, I agree.

She has in mind a specialist named Dr. Friend. Who could resist?

***

"You'd be crazy to move now!" declares Dr. Friend several weeks later, after I speak my piece. A genial fellow with tufts of silver hair framing ample ears, he sits in a big black leather armchair by the window of his elegantly furnished suite off the lobby of an apartment building on Central Park West, a few blocks down from home. Mom and Dad both promised he wouldn't tell me what to do, just help me make up my mind.

"Is—is that what you think?"

"Look, you're starting high school, which is big. Life is best taken a step at a time. Don't overwhelm yourself, particularly considering your upcoming surgery."

I don't want to think about that.

My scoliosis has become worse to the point of dangerous. The miserable back brace isn't working. I can only put off an operation so long. The sooner the better.

When my attendant picks me up at Dr. Friend's office and pushes me home along C.P.W. on what's turned into a blustery spring evening, almost immediately I decide to disobey the shrink.

Chapter 3: My unfortunate, life-changing incarceration

1976-1978

My first day at Steiner, no one is expecting me. Housed in a converted townhouse on East 78th Street between Fifth and Madison avenues, the school is like a disheveled Old World dowager. It's warm and nurturing yet mothball smelling.

I'm the first and only wheelchair student ever—pioneering, again—and nobody's checked if the elevator is working. It's very old and arthritic, we're told. Like at Walden, Dad has to jerk my chair up the front steps, but we're used to that. Beggars can't be choosers. Inside is another story. We hadn't reckoned on an elevator problem.

The tiny "car"—a cargo elevator, if ever there was one—refuses to move from whatever floor it's on. When someone at last finds it and manages to open the tarnished old gate, my chair doesn't fit inside. I'm about ready to give up, whatever that means, when Dad removes my footrests and finagles till my chair and I are wedged in. That said, there is no extra space for another person to push the buttons, which I can't do myself. So long-legged Dad vaults the staircase to summon the elevator to the third floor. Still the rust bucket won't budge, until—honest to God—someone kicks the door from the outside!

Needless to say, I'm now late for my first class.

All of which gives me plenty of time to size up the people I'm hurriedly introduced to.

Part 28 of "Miracle Boy”

2010-10-31T15:33:00.000-07:00

One glorious release from this rigidity, so to speak, is masturbation. Whether kosher or not, I indulge nightly.

I have zero privacy but try to keep it secret. One midsummer weekend I go with Dad and Barbara to the Jersey Shore, where I eat nothing but fried fillet of sole—sole because I believe it fits kashruth and fried because that's the only way I can stand it.

While pushing my manual wheelchair on a quiet path, having left Barbara behind at the motel pool, Dad says, "Tell me, Ben, are you able to ... reach yourself?"

It takes a moment to understand. I resist the giggles. Really, I'm delighted. So nobody's caught on?

Here's how I've been hoping to keep my nightly ejaculations private and undetected: First, I ask to sleep on my back, though I can't actually sleep that way. I ask to have my hands laid flat on either thigh. I say it's more comfortable that way. Then I say goodnight and the light's turned out, the door partially closed. I have just enough hand strength to do what I need ... After, I wait for the spew to dry before calling out to roll over.

"Yes. No problem there," I'm saying as Dad rounds a turn. The Jersey Shore is a sexy place. Lots of skin, and a certain casual attitude. My imagination gets a little carried away. "Now, Dad," I say, "can I ask you something?"

"Fair enough."

"What would you do if I said no, I can't?"

Of course, I'm hoping he was going to offer a prostitute to break me in. A warm breeze blows and seagulls caw. Dad laughs. "It's a good question!"

***

On the long car ride home, Dad asks me trivia questions to pass the time. Literature. World capitals. History. Simple math. I'm a disaster! No, Spain is not the capital of Italy! Boy do I get shit for that blunder. I haven't read the books Alec has, haven't studied the subjects. Blame my weird school. Or maybe I am just dumber. So soon as I'm home I tell Mom I want to transfer for high school. She consults by phone with Dad a few days later, and in the end they don't argue with me. They've seen the problems at Walden.

When it comes to equal access, we learn, schools haven't changed much. It's 1976, and the Education for All Handicapped Children Act has been on the books only a few months. The new law harks back to a 1972 court decision in Mills vs. Board of Education. Not as famous as Brown, but similarly significant for the disabled. Basically, the court ruled that the District of Columbia could not exclude children with disabilities from the public schools.

Nevertheless, here in Manhattan, the old barriers and prejudices remain. Plus, for me, there's the problem of having no letter grades from Walden to bolster my credentials. Walden report cards are just a bunch of comments, nothing quantifiable. As we tour the noisy halls of Dalton School on the Upper East Side, for instance, and I watch the preppy kids carry around heavy books with great energy, and meet administrators who look like stereotypical librarians in their cardigans and loafers (the teachers are a bit scruffier) and talk about requirements and prerequisites, I frankly begin to fear I'm too far behind to function at a better school anyway.

Mom sends me to an education guidance counselor, who evaluates my IQ and recommends a small school on the Upper East Side called Rudolf Steiner. Time passes, but ultimately I'm accepted sight unseen.

Just when I think it's all set, nature throws us what's now called a game-changer.

***

HALLOWEEN'S FREAKS

2010-10-28T11:48:00.000-07:00

Welcome, NPR listeners!

As will soon become eminently clear, if it isn't already, I'm a poor blogger.

Lately, I've been using this site primarily to push and preview my book-in-progress, MIRACLE BOY GROWS UP.

But today, I'm going to print the original full-length script of my recent NPR commentary, as read and recorded at NPR West studios last week. Not much different from what was broadcast, except the intro.

As always, please click FOLLOW on the right, follow me on TWITTER, friend me on Facebook, watch my book promo on YouTube, or drop me an e-mail (as long as it's kind).

The more of you, the better to convince publishers to put my book out there.

Thanks for dropping by. Keep in touch…

HALLOWEEN'S FREAKS

For me, Halloween can be an odd, unsettling holiday.

I have a severe, highly visible disability. I use a wheelchair that I drive with my mouth, and my spine is hopelessly curved. Sometimes people stare at me.

I never thought about a connection between disabilities and Halloween till I learned of the once-common fear of deformities--the limping, hunchbacked, hook-handed, or one-eyed monsters of ancient fairytales and old HORROR movies.

Even the word "creepy" comes from the same word as the oldest term for folks like me, the politically incorrect "cripple."

When people with disabilities weren't feared, they were often gawked at in carnival freak shows. Or objectified for their noble suffering, like Tiny Tim. As if we really had any choice about it.

As a kid, I tried not to think about what people might make of me, sitting in a wheelchair in my Batman or Lone Ranger costume. A hero who can't walk? Why not? Halloween is a celebration of the imagination, after all!

Sure, some kids teased. But I often scored more candy than my brother, who is not disabled. I saw no reason to complain about being treated differently.

Yet as an adult I began to feel uneasy about the creepy exhibitionism of Halloween, the way it encourages staring at all things weird. I can't help wondering if Halloween doesn't promote ridiculing differences, even a kind of conformity.

Yes, I know, for most people Halloween is an escape from conformity, but for those of us who don’t quite fit the norm, that's nothing special. In fact, demonstrating that you're not exactly what people expect is pretty much what disabled folks do every day.

When I take my own kids--who do not have disabilities--trick-or-treating, I often attract as much attention as they do. And no one likes being stared at that way.

It's not the same in daylight. When kids see me on the street, careering in my power wheelchair, they often say things like, "Wow! Can I have one of those?"

Hey, my chair IS an amazing, transformative device.

"Cool, isn't it?" I'll say back.

I figure I should do my part to make kids comfortable with people like me. Sometimes I have to tell the adult with them that it's okay, that kids shouldn't be forced to look away. I encourage them to ask questions, to learn.

Maybe I should see Halloween as an opportunity for grown-ups to do that, too. The holiday challenges us to stretch our perceptions. Maybe it can also teach us not to shrink away from the unfamiliar or judge appearances.

This Halloween, I'll try to remember that I really have nothing to fear.

###