RAMPING UP, so to speak...

My agent said to improve my platform.

It seems the publishers who expressed the most interest in publishing my book held off for one primary reason: I'm not well known. How can I reassure them my book will stand out in the already crowded shelf of memoirs?

For me, this was a new use of the word "platform." As in a platform from which to launch book sales, I guess. If not fame, then a public-speaking circuit or organization that would guarantee a certain number of bucks' coming in.

So rather than going through yet another rewrite to tantalize publishers, my mission became to boost interest in me, who I am, what my story is, and what I've got to say.

The best way for someone like me to do this is to write. And write, and write. I could pretend one of my kids had gone up in a balloon, but that'd send the wrong message. Right?

The Internet makes self-promotion easy and inexpensive. I already had a Web site to serve as a sort of portfolio of published work. The idea being, when I approach magazines with story ideas I don't have to enclose photocopies of clips and tear sheets, as in the old days. I can pitch ideas by e-mail, with a link to my site, which in turn is linked to my writing samples.

I already had a Facebook account, for no better reason than everybody does.

I had thought for some time about blogging but couldn't see the point. If my writing is going to go out to the public, I want it to be for pay. After all, I'm a pro.

Nevertheless, I did have some columns that never sold and probably never would. So I put them on a blog. As I kept writing columns and sending them out, I amassed even more blog material.  Sure, some got published, but the rest got blogged. Gradually, I thought of more and more things that seemed blog appropriate. Nothing worth polishing for print or pitching to an editor. Just stuff I found interesting.

For this most recent NPR piece, my editor asked if I wanted to refer listeners to my blog. This never came up before, my last NPR Commentary being four years ago, when the blogosphere was young. I didn't think much of the blog I had, but why not? Sure enough, some NPR listeners did go to my blog. And they liked it. (At this point, you're probably wondering why...)

Then a friend suggested I link my Facebook page to my blog, to increase traffic. Brilliant! (Thank you, Steve.)

The result: In the five days since my most recent NPR Commentary aired , the number of people who signed on to follow this blog jumped from 1 to 27 and counting. I've added 30 names to my e-mail list of people to notify about future columns, so it's now near 125. I have many new Facebook friends. And a whopping 875 people have visited my Web site!  That's 175 a day, a new record for me, by far.

So, bottom line: Hooray!  I'm encouraged. I'll keep writing essays in hopes of making those numbers even bigger. And then we'll tell publishers, If this many people respond to short essays, imagine how many my book can generate!

Is My Crip Better Than Your Crip?

(from 4wheelchairusers.com)

A friend writes:

     I'm the parent of a 26-year-old young woman with cognitive and physical disabilities. (She had a stroke at birth, and later had the left hemisphere of her brain removed to control intractable seizures.) I'm privately offended by the widespread casual use of the word "retarded" as a synonym for "stupid." I hear this from people with physical disabilities as well as the able-bodied. I also wince a little whenever I hear a person with physical disabilities ranting about how people are confusing him/her with a person with cognitive disabilities just because he/she is in a wheelchair. I completely understand where this frustration comes from. But I don't think the "ranter" understands that he/she is spreading prejudice against people with cognitive disabilities by conveying such a vehement "I'm not one of THEM" kind of attitude.

     Going even further, it's my observation that some people with physical disabilities are prejudiced against OTHER people with physical disabilities. For example, some of my friends in wheelchairs won't consider romantic involvement with another person in a wheelchair. They see the other person's disability as an impediment, because they want their partner to be able-bodied. Or, they feel insulted by the suggestion of dating within the disabled community, as if they're being asked to stay among "their own kind." That's not the point at all. See the person, not the disability. I thought that was the point.

To which I replied:

(from freedomtodrive.com)

    You're absolutely right about people with disabilities who shamefully put down other people with other disabilities, and too often those with cognitive and psychiatric disabilities are treated as the bottom of the totem poll. Happens all the time, and I don't like it. (Often, even paraplegics put themselves over quadriplegics, for similar reasons.) Sadly, it does seem to be part of human nature. African-American men who are attracted to white women (esp blondes) as status symbols (okay, blondes get put down a lot, too, without justification, and I certainly don't think anybody has the right to tell anybody else whom to date or marry, okay, but let's not get distracted), or more seriously, Hutus vs tootsies and Shiites vs Sunnis, etc...
    Why do we do this?

Well, dear blog readers, what do you think?
  Are people with disabilities prejudiced against other PWDs?
    Is it the same as infighting among other subpopulations?
      And most importantly, can't we all just get along?

***

An update to yesterday's quandary:

I've decided.  I've decided to turn down the Muscular Dystrophy Association's Quest Magazine. Decided I'd feel too onerous a conflict of interest, especially when writing future pieces that criticize the charity and its odious Labor Day telethons.

Anybody looked at Quest Magazine lately? (It is online, but I'm not posting a link here. Search for it yourself.) It does seem much improved, to me, compared to what it used to be, but unfortunately it's still part of an organization I can't stomach.

Feel free to educate me if I'm wrong. Go ahead--just try.

Moral Quandary: Your Help Needed

(Jerry Lewis, at a recent telethon)

Funny thing my recent NPR Commentary generated --

Among the flattering e-mail, which amazed and humbled, was a message from an editor at MDA's Quest Magazine. She wanted to use one of my blog posts as the basis for an opinion column in the magazine. If I could turn it into a good 1000-to-1200-word piece, she'd pay me for it.

Great, right? Maybe.

For those who don't know, I've been a pretty harsh critic of the Muscular Dystrophy Association. I've published columns against the organization and its Labor Day Telethon. I've participated in protest actions against it. It not only promotes pity, but refuses to aid in pursuing disability civil-rights issues. It refuses to divulge information about how many people with disabilities it actually employs, or how much power they have. It certainly doesn't hold its corporate sponsors to any kind of standard for accessibility or antidiscrimination policies. Don't get me started. (For more about this, look here or here or elsewhere, including scrolling down to my archives here).

When I and others have politely tried to get those in charge at MDA to change, our efforts were strongly rebuffed. In fact, we were insulted ... called names.

So yesterday, I told this kind, blameless editor, You sure you want me?

But then I realized the real question was, Was I sure I wanted to work for MDA?

To me, Quest has gotten better over the years. Sometimes I even read it now. But it's still the MDA organ. So I had misgivings.

Here's the thing: What she liked was my Glee blog, below. She liked my evenhanded way of looking at media, specifically media images of disability.

The primary problem is, my primary gripe against MDA has been the offensive, outdated way it's media--especially its annual telethon--broadcast unfair, exploitative images of people with disabilities. (Not sure I got all my adjectives in the right order in that sentence, but I hope you get the idea nevertheless.)

So the only way I could in good conscience write for MDA's Quest Magazine would be if I could criticize the way the organization portrays people with disabilities.

Yes, I know MDA has been wonderful for many families. It provides access to neurologists with expertise, if you don't have insurance to cover the cost. So in that, I might even give it high marks as a medical charity.

I have serious problems, however, when MDA represents itself as a champion of disability rights.

My beef with MDA is not the subject of this blog. Rather, this is a confession. I debated in my head, and out my mouth (sorry, my darling wife, for talking your ear off about this).

On the one hand, I'm supposed to be a professional writer. I take commissions wherever they're offered. On the other, writing for MDA would not only cost me cred in the disability community; it would be tantamount to a conflict of interest, especially if I ever intend to publish more words critical of it, its Labor Day Telethon, or its chairman Jerry Lewis. And believe me, Dear Reader, I do. I do.

Now, the Quest editor who contacted me is innocent in all this. And we have not officially concluded negotiations. That's because I haven't entirely made up my mind.

So I open it up to you, my blogosphere pals? What should I do? What would you do? And how much wood would a woodchuck chuck if a woodchuck could chuck wood?

Thank you for the kind words (& keep 'em coming)!

Hooray! To start the New Year off with a bang, my NPR piece was broadcast on Monday morning, January 4, 2010. Judging by the flood of kind e-mail I've received about it, it must have come off all right. I'm gratified and intimidatingly humbled about reaching so many people. Thank you all for listening and writing!

The actual transcript--slightly different from the one on the NPR.org/opinion site--is linked to my professional Web address at www.BenMattlin.com

For anyone who cares, here's the original long version of the Commentary--the one I submitted, before my editor made cuts to save precious broadcast minutes. Read on, keep listening, send links to friends and colleagues, and know that I'm always delighted to hear from you.

A GOOD ENOUGH YEAR

For me, the new year is as much about looking back as looking ahead. At least this time it is.

I turned 47 this past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. Nobody knew that at first. It can remain invisible for many years. Then it gradually, relentlessly weakens muscles.

In my case the weakening began at about six months. My mother noticed I wasn't developing as my older brother had. I didn't sit myself up, or stay up when put into a sitting position.

We now know that about half of the babies who manifest symptoms of S.M.A. die before the age of two. Their hearts and lungs become too weak to go on.

I was one of the lucky ones.

I've used a wheelchair my whole life and no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. Most days I feel lucky. Always have. So why do so many people feel sorry for me?

They don't know me, of course. They don't know that I was lucky enough to grow up in a good family, to graduate from Harvard, to get my writing published, even to marry and father two terrific little girls. I consider myself lucky for a lot of reasons.

Still, people who think they know me from what they see on the outside have said to me, "If I were like you, I'd kill myself."

This is supposed to be a compliment, I think. They mean to commend my perseverance, my pluckiness. So how come I want to say back, "No you wouldn't"?

(Or "If I were like YOU I'd want to kill myself, too!")

Yes, there are some people in terrible circumstances, with painful illnesses, who do want to die. But there are also many, many people living in conditions I don't envy--living in famine, in war-torn countries, or in abject poverty in this country--who retain a stubborn sense of hope and struggle on. People whose lives I wouldn't trade for my own.

It happens every day. Nothing all that extraordinary.

Don't get me wrong. I don't see myself as a kind of modern-day Tiny Tim, pointing out the good in people, cheering everybody up. No thank you. I reject holding myself up as an inspiration, an example of the triumph of the human spirit.

Anybody who really knows me knows that. At home I grouse and kvetch all the time. Why not? It runs in the family. Plus, life is rough. Especially for me, at times.

Like two years ago. 2008. I had to spend most of that year in a hospital bed. A surprise gastroenterological infection required emergency surgery. Then something went wrong under the knife. Myriad dangerous complications ensued. I nearly died.

But here I am to tell the tale. So yes, I do feel lucky. The year just past wasn't anything special. The usual assortment of good and bad. But it was blessedly drama-free, and after its predecessor that was enough to make it a good year.

Sure, I hope for better things ahead. I hope for continued good health for my family and myself. For our country and our world. I hope in the new year to do better than in the year just gone by. To finally get that book contract. To really master Facebook and Twitter. And to do more of these commentaries for NPR.

But even if most of that doesn't work out, I'd still say I'm lucky. Because sometimes just normal life is good enough. And for me, this life--life in a wheelchair--is normal. And that's good enough, too.

###

Back to NPR … and loving it!

I just got back from my NPR taping. It went well, I think. I'm feeling good. So please disregard the column a few screens down. The one in which I'm critical of an NPR story. No hard feelings, right? We're friends again.

My commentary--my first in four years--was slated to run on New Year's Day, though now it looks like it'll be the following Monday. Or it was, depending on when you're reading this.

One of my New Year's wishes is to do more NPR Commentaries. Another is to get better at blogging--what IS this blog about anyway? (If the still popular Seinfeld was a show about nothing, can a blog about nothing be successful too?) And Twittering and Facebooking, etc. If anybody reading this has any advice, please do share.

Arriving at NPR West is an experience of mixed reactions. It's in a nondescript building. A warehouse. In a fairly industrial area. A far cry from the Sony Studios a few blocks to the north!

I'm nervous. I'm five minutes late. But nowhere near as nervous as I was on my previous visit, four years ago.

Yet inside the place is very hip but quiet. Casual, clean. I'm energized and my nervousness evaporates.

I keep thinking it would make a great lounge/café. It's got exposed pipes and things in the high ceiling, and TV screens abound. An echoey space, yet quiet as a library. Lots of glass-walled, soundproof mini studios.

I was escorted to one of the smallest studios. Passing and passing up the offered donuts and snack machine. My older daughter, Paula, and my assistant Beethoven are with me. They sat out in the lounge area. Don't think they took any donuts or Fritos either.

My studio really only had room for one. I pulled up to the desk, which was easier than I remembered, now that I no longer drive my wheelchair with a hand control. The last time I was here, the hand control bumped the desk and I had to position myself way back.

Before removing himself to the lounge area, Beethoven removed the device I now use to drive my chair, which is a mini-joystick installed on a plastic collar. He helped position my script on the page holder. The studio person pulled a hotdog-size microphone close to my mouth. In front of me were two computer screens and a lot of switches and dials. Which I willfully ignored. Beethoven gave me a swallow of water and then left the room.

Through the big headphones I was introduced to my producer Joanna, in Washington. After some introductory bla bla bla, I set in to read my bit.

It went smoothly. I even remembered to substitute "in the past year” for "this past year," as my editor Maeve had requested, and to take out the word "little" when describing my daughters.

"You were clear and had energy," said Joanna. "I'm going to ask you to read the whole thing one more time, just in case." I did, and that was it. No additional retakes (unlike in my last visit).

We were out of there in less than a half-hour.

A good end to an un-bad year. Or a good beginning for the new one, I suppose, depending on when it's actually broadcast.

Afterward, dropped off Paula at the Starbucks on the Third Street Promenade to meet her friend Gina. They were going for birthday makeovers (Paula turned 14 yesterday) and a movie. It's raining outside. I hope Paula remembered her umbrella.

Here's hoping 2010 brings everyone umbrellas if it's raining--as well as peace and joy, good fortune and good health, whatever the weather.

(One curmudgeonly note: I trust we can stop saying "two-thousand and..." and get back to the simpler way of saying years. You know, as we last did in good ol' nineteen-ninety-nine. In this case, saying "twenty-ten" instead of "two-thousand-and-ten." Y'think?)

GLEE's “Wheels” episode

I might get in trouble for writing this, but I really liked last night's "Glee." It was the wheelchair episode of the Fox network's hit TV series--you know, the one in which the whole group, in trying to learn greater empathy for their wheelchair-using member Artie, spends time in wheelchairs.
It brought up issues such as why it's unfair to have the wheelchair kid travel in his dad's car instead of the club's bus (the school won't pay for an accessible bus). And the lack of ramps around the school.

It even ended with the kid's annoyance that the others are only pretending, that although the fact that they're spending time in wheelchairs seemed nice at first--he goes so far as to start a romance with the girl who stutters, sensing a kindred spirit--the others can always get out of their wheelchairs … a choice he doesn't have. I, too, have always had doubts about these kinds of exercises in empathy.

I acknowledge that, at times, he was a tad pitiful in his isolation and exclusion, but it rang true for me. And he was strong in that he taught the others how to dance in a wheelchair. He was teaching them instead of being helped or pitied, and not in a sappy or inspirational way.

The only problem, in case you haven't heard, is that the actor playing Artie (Kevin McHale, apparently from a band called NLT) does not actually have a disability. He does it well, I think. The way he sits. The way he moves. Could have fooled me. But sadly, no, the actor is able-bodied. And, so far anyway, there hasn't been a scene of him dreaming of walking or anything like that, thank God. He's always in the wheelchair. Which is to say there's no reason for his being played by an able-bodied actor, no excuse for not hiring an actor who can't walk.

Why on Earth not choose an actor/singer/dancer who really does use a wheelchair?

Not that he should have been excluded because he's not disabled. Let me be clear:

I have nothing against nondisabled actors portraying characters with disabilities IF actors with disabilities are also given the chance to portray characters that don't necessarily call for disabilities. If you're casting a doctor or lawyer or cop or whatever, why not use or at least consider an actor in a wheelchair (or who's blind, deaf, etc.)? That would be fair.

Unfortunately, the entertainment industry is not fair. From what I've heard, although the producers of "Glee" claim it's hard to find someone with sufficient talent for their unusual program, they DIDN'T EVEN CONSIDER PERFORMERS WITH DISABILITIES. They can't say the talent wasn't there, because they didn't audition any.

"It was very hard to find people who could really sing, really act, and have that charisma you need on TV," Brad Falchuk told USA Today (linked below). Falchuk is an executive producer of "Glee." Another thing he found hard, the poor dear: "It's hard to say no to someone that talented," he said, of McHale.

Hey buddy, you think YOUR life is tough?

(A familiar tactic: the guilty acting like the victim.)

Would having an actual crip in the role have enhanced last night's storyline? Impossible to say. I thought the story was well done anyway. But the casting is definitely, patently unjust to performers with disabilities. There are so few roles for them, yet so much talent.

Possibly the best current example of an actor with a significant disability in a role that doesn't require it can be seen in the original "CSI," the CBS phenomenon. My old friend Dave Hall, a.k.a. Dr. Robbins, struggled for many years as an actor who uses crutches. He worked, but not enough. Did a lot of radio and cartoon voices. Until "CSI: Crime Scene Investigation" came along nearly a decade ago.

The latest addition to the short list of TV programs featuring actors with real, highly visible disabilities is "Brothers," also on Fox. The comic actor Daryl "Chill" Mitchell is a strong character in an unfortunately mediocre sitcom, it seems to me. Okay, I haven't watched many episodes. And the little bit I've seen bothers my disability consciousness. Look at the background sets, for example. The bar he co-owns with his brother has three steps at the front entrance. How does the dude get in every day? Is there a back entrance? (If this or other access issues were dealt with in an old episode I missed, I hope someone will let me know.)

Here's the point: "Glee" errs in having a nondisabled performer portray a wheelchair-user. That's for sure. It's the disability equivalent of black- or yellow-face. Nevertheless, it's gone further than any other program I can think of in bringing disability issues to the fore. No, its treatment of accessibility and acceptance and such may not be perfect. It isn't everything activists want. But let's put its shortcomings in context, shall we? To some, its gay character, Kurt--is the actor, Chris Colfer, actually gay? I have no idea; doesn't matter, since so many (secretly) gay performers do get work playing straight roles--is fairly stereotypical, too. He likes musicals and talks a lot about his fashion sense. He doesn't really advance gay issues much, does he? Kurt also figured prominently in the wheelchair episode, but to me to less eye-opening effect.

Then there are the bimbo blonde cheerleaders, the smart nerdy Asian kids, the heavyset African-American woman who sings a mean gospel, the dumb jocks, etc. Stereotypes, all! But in a way the show turns those stereotypes upside down. It makes fun of making fun of people. And it celebrates the differences.

If "Glee" is going to put together a group of minority misfits, isn't it great that it's including disability--at least conceptually, if not in actuality--as part of the mix?

Sometimes it takes a member of the majority culture, an insider, to bridge the gap (open the door?) to integrating a misunderstood minority group into the mainstream. I know this firsthand. Many bigots find it easier to accept me as an equal when they see me being accepted by people like themselves, that is, in the context of my nondisabled family. It's as if, if SHE can accept him, then maybe I can too . Mr. Spock had to have Capt. Kirk to make him acceptable--likable, even sexy--to a mainstream audience. It shouldn't be, but it is so.

Do the ends justify the means? That is, do the benefits of the "Glee" episode outweigh the sins of disability blackface? I'm not an actor, but from where I sit, whether justified or not, the result--bringing into TV watchers' living rooms the concept of the importance of providing a sufficient quantity of ramps and accessible, integrated buses--looks like a good thing, a measure of progress toward integration.

And after all, isn't integration what it's all about?

For more on this subject, see:
http://www.usatoday.com/life/television/news/2009-11-10-glee-wheelchair_N.htm
To view the actual episode (or others), go to hulu.com or
http://www.fox.com/glee/

It sounded good on TV...

This may not really qualify as a blog--but then, look at my productivity here lately. Begging blogs can't be too choosy.

Here's my short, thoughtful query for this Veterans Day:

How come it sounds so much better on TV when someone says, "I heard you were dead" than in real life? I thought of this last night watching NCIS: LA. The idea, of course, was that our hero and his nemesis were misinformed about the other's fate. It added an element of surprise, of drama, to the story. Made everything that happened afterward seem terribly important.

Yet on the other hand, there's real life. Remember real life? That's like on another channel.

In real life, last year my family rushed to the hospital where I'd been admitted via the emergency room because they'd HEARD I WAS DEAD... or at least close to it.

A whole different vibe, no?

Please tell me what you think.

And in case you missed it, the news of my death was greatly exaggerated. Well, premature, anyway.

So celebrate the reality that I'm still among the living by visiting my friends at Not Dead Yet (http://www.notdeadyet.org/docs/gear.html), and buy the T-shirt!