JERRY LEWIS' LEGACY

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!"

Part 15 of "Miracle Boy”

BUT FIRST, a few introductory thoughts:
A Harvard pal who's just published a book tells me, "You don't need a blog to sell a book."

Well, I think, maybe YOU don't. But I seem to.

Then again, she makes me realize something. This blog-to-book thing could just be a fad, a passing trend. It's worked for Julie Powell's Julie and Julia, and Sh*t My Dad Says by Justin Halpern, and even, in a way, the I Can Has Cheezburger? series. But that doesn't make it a rule, does it? Surely there's no requirement, no law, that says you must go this route.

And like most media types, the editors I've been encountering are simply hopping on the bandwagon. Just as, a few years ago, they might have said, “Write about vampires!” or, a few years before that, “Wizards! Especially young wizards. That's the thing!" Or a few decades earlier: "Teenagers and drugs!"

Getting into online media is a lot easier than getting before TV cameras. But that doesn't make it right or necessary. Does it?

What do you all think? Is there another, better way to prove I have an audience for my humble words?

I'm extremely grateful for and humbled by the number of you who do read this. But in truth, I'm certainly not generating the kind of numbers that a publisher would want--which I imagine is something daunting like several thousand.

Puh-lease! To do that I'd have to upload something pretty outrageous or scandalous. Something that really has no connection to my book idea at all. So what would be the point?

Is blogging and Twitter stuff and all just a passing fad?

Please share your thoughts.

Meanwhile, just in time for Labor Day, here at last is the next installment of MIRACLE BOY --


. . . I'm not particularly interested in being able to walk. I've invested a lot in getting used to life on wheels. I like having someone always with me, pushing me and protecting me from the world. Walking seems a dangerous way to get around, two legs a perilous perch. Aren't walkers always complaining about sore and tired feet? Being in a wheelchair is part of what makes me stand out from the crowd, so to speak. It's a piece of my identity.



My identity seems to be one thing in these muscular dystrophy ads and quite another in my daily life. My disability may be measurable by Dr. Spiro, but what it means—its impact on who I am and my place in the world—is open to broad interpretation.


The following Labor Day we turn on the TV to watch a little bit of the telethon. To me, it's boring and corny and my mind wanders. Mom doesn't like TV (which is funny since she used to work in TV), and has little patience for the broadcast despite her fondness for the muscular-dystrophy organization itself, but Dad is transfixed. "Oh, oh, oh!" he erupts suddenly with forced melodrama. "Those poor kids! I've got to call right now and pour out my nickels and dimes!"


Then he bursts into a hearty laugh. Alec laughs at Dad's laughing, and I do too. I'm not sure I get the joke, but it has something to do with the schmaltzy profiles of weird, dying kids. Usually Alec and I like to watch comedies like F Troop and I Dream of Jeannie, which Mom and Dad don't watch with us. Another show I like is Ironside, which Mom suggested I try. She thinks I like it because the police chief is in a wheelchair, but that's not really the point of the show, is it? Still, it's a very different image of people like me than what you see on the telethon.


"You shouldn't make fun of them," Mom says, reentering the room. The TV is in Mom and Dad's bedroom, and she's come in to get something from her drawers. "Just because they're not like Ben doesn't give you the right. It's a good cause and it just might help Ben one of these days."


Dad says he's sorry and didn't mean any harm. "I know it's important," he says from the phone. He's gotten up from their king-size bed to call in a donation. They're not like Ben. That's what Mom said. That's what I hear. It's been the going line for a long time. When people treat me like I am one of those pathetic dying kids, when strangers feel sorry for me, it's funny in both senses of the word—odd and humorous. On occasion little old ladies offer to buy me cookies, and my parents won't let them. Mom says I shouldn't feel sorry for myself and shouldn't encourage other people to either.


So why, I wonder, does she defend the telethon? It does bring images of kids in wheelchairs into people's homes, instead of maintaining the status quo of unsightliness and shame. But it certainly doesn't make them look good or competent or equal. It doesn't glamorize them. It offers them up covered in a syrupy goo of sentimentality.


And if those kids aren't like me—and they aren't—then why does Mom say the Muscular Dystrophy Association helps families like ours? What's it got to do with me? I don't have muscular dystrophy. I'm not going to die from my spinal muscular atrophy—that's what Dr. Spiro says, anyway. I've outlived the dying phase. I don't see how the pathetic spazzes on the telethon have anything to do with me except for being in wheelchairs.


No, I definitely don't want to be confused with those kids. I don't want to feel sorry for them, either. It's too depressing to bear, and I wonder if it's real anyway, if those kids are as bad off as they say or if they're actually like me and the telethon is just telling people to feel sorry for them. In any case, I'm brought up to keep moving forward, never to pause for pity. Pity is useless, the enemy of self-esteem and industry.


Mom always says I can be anything I want when I grow up, and I believe it's true.

***

Part 14 of "Miracle Boy”

Two weeks later my photo appears in the Daily News, another paper my family never gets but we do this time. I don't pay attention to the words under the picture, but Alec tells me it says Santa cares about Jerry's kids. I have trouble understanding the phrase "Jerry's kids" because, for one thing, I've never met Jerry. I'm even invited to appear in the New York studios during the next Labor Day telethon, but still never meet Jerry. I meet the hosts of TV's Wonderama, Sonny Fox and Bob McAllister, at a later fund-raising event, but that's about as exciting as it gets.


When I'm eight, I pose for a full-page magazine ad "standing" in uncomfortable leg braces under the caption, "If I grow up I want to be a fireman." If? My life expectancy is normal. Mom and Dad and Dr. Spiro have told me so. Sure, I want to be famous but don't spread lies about me! Besides, I don't want to be a fireman. It's someone else's boyhood fantasy, someone who can walk and climb, perhaps, but not mine. I want to be a superhero, a police detective, a starship captain, a brilliant scientist like Dr. Quest on Jonny Quest, but never a fireman. I keep my fingers crossed behind my back as the camera clicks. I visualize a secret laboratory and computerized panels in an attempt to communicate by E.S.P. my true desires. Afterward I tell Mom I want to quit being a poster child. She asks if I'm sure but offers no further objection.


The truth is, I'm beginning to recognize that I'm not particularly interested in being able to walk.

***

Pre-Adolescent Stripping, Santa Claus and MDA: Part 15 of "Miracle Boy

It's been a busy week here at casa Mattlin. (Chez Mattlin? Whatever.)

I'm under deadline for Institutional Investor, among other things.

Anyway, without further delay, part 15 of "Miracle Boy Grows Up"...

Naughty and Nice

***

The "Naughty Bits"

By now Joanie and I are considered girlfriend and boyfriend.


At my apartment, in my tiny bedroom, when and where no one else is around, we decide to undress.


For me the most burning question is, how? How to manage it logistically?


Under the pretext of needing a nap, I ask Inez, our housekeeper, to lift me out of my wheelchair and put me in bed. Inez is the only one home besides Joanie and me, but somehow it still feels like we're done.

Once Inez has left the room, Joanie closes the door and I instruct her how to open my jeans. She knows how, of course, but I feel she needs encouragement.


"I can't unbutton them myself," I explain matter-of-factly.


She insists on going first, and begins to lower her jeans and underpants. I try to look but can't—I'm not sure what I see. Then it's my turn. To my surprise she says no. Fearing she's merely being bashful about helping me, I try my usual brand of reassurance. "You can do it. It won't hurt or anything."


I don't think about the implications of her actually touching me. We're just having fun, sharing. She continues to say no and I give up. Inez puts me back in my chair and we play ordinary board games. But it's clear: I'm not going to let my handicap get in the way of my romantic life any more than I let it detour my education or anything else.


It's a lesson I'll carry with me long into adulthood, when it really matters.

***

In 1968, the Muscular Dystrophy Association of America's Labor Day telethon is broadcast outside the New York metropolitan area for the first time. Launched in the early-50s as an occasional four-hour fundraiser on a few New York television stations, it became a 19-hour star-studded TV event on Labor Day 1966, though still within tight geographical boundaries. In 1969, when I'm seven, I'm invited to be its poster child.


We think highly of the Muscular Dystrophy Association in my household. It tells us about my spinal muscular atrophy, what to do to keep me healthy. Mom and Dad say it helps pay for Dr. Spiro, my neurologist. Someday it might find a cure so I can walk, they say.


On a fall Saturday afternoon Mom takes me to a studio downtown—a large, mostly empty windowless space. At the back, under very bright lights, a quiet girl a few years older than I am stands awkwardly with the aid of crutches. She has short, dark hair and wears a short green pinafore dress that exposes leg braces. Mom says she's the outgoing model. I should speak to her for tips about what it's like to be a poster child.


I watch silently. The girl doesn't do much, just stands there as a camera clicks. Then a man in a suit waves for Mom to bring me over. I'm parked in my wheelchair next to the girl. Mom walks away. A fat man in shirtsleeves starts snapping photos of the two of us. Am I supposed to be doing something? I squint at the bright light. After a while, we're told we're done.


Is that what it means to be a poster child?


The photo appears in a Sunday supplement my family doesn't normally get. I dream of fame.


In December I'm asked back. I'm to be photographed on Santa's lap. I'm beginning to have doubts about Santa—after all, I'm seven now—but I figure it's probably not the real one for the picture, since I'm not sure Santa does that kind of work. Some Jewish kids don't celebrate Christmas, but we do. Every year Dad takes Alec and me to see Santa at Macy's or Gimbels, and Santa always brings us presents. I'm not sure how he gets in since we don't have a chimney, and he couldn't get past the doorman and elevator men without being announced. Probably lands on our tiny terrace and comes in the glass door or a window. That's all Alec and I know about Christmas—what we learn from the TV specials. Nothing religious. We also celebrate Hanukkah and the other Jewish holidays. But a number of things about Santa just aren't adding up. For instance, there was the year I requested a Johnny Lightning racetrack and I got a Hot Wheels set instead.


For the photo shoot, I'm put on Santa's lap and told to smile. Finally some instructions, some direction! I plan to tell Santa one gift request and my parents another, as a test. Yet in all the hubbub of clicking cameras and bright lights I forget to ask Santa for anything. I'm still not sure he's the real Santa, but Mom says this will count as my Santa visit so I'm not taking any chances. I tell Mom I blew it, I forgot to ask Santa for anything, and she says I can tell her what I was going to ask for and she'll pass the word on to Santa. I still want to test if Mom is really Santa. "No, it's a secret," I say.


The friendly man in charge overhears me and offers to be my messenger to Santa. He smells nice as he leans over me, letting me whisper in his ear, and promises not to tell Mom. But later, as we're getting ready to leave, I see them talking.

###

(Hey, please leave a comment below. Let's get this party started! 
Till next time, thanks for reading.)

Medical Progress Rolls On...

A short-ish blog this time … because I've been continuing to think through things already posted, and don't have much to add.

First, I'm grateful for all those who've commented intelligently (here and on Facebook) about my entry on the role of medical research. I'm trying to refocus my comments into a piece for NPR. I'll keep you posted on how that progresses.

Second, this past week I was struck by some new material from the Muscular Dystrophy Association about spinal muscular atrophy. I may well be stupid on medical and scientific issues, but it seems to me that the more we learn about the diagnosis the less we really know.

What do I mean by that outrageous assertion? First, one genetic mutation was discovered that seems to be the culprit behind four different types of SMA. I believe I was Type 1 originally, once upon a time--the infantile and progressive version also known as Werdnig-Hoffmann Disease--until I outlived that prognosis and, thus, instantly became Type 2, which is early onset but with a somewhat gentler progression. Types 3 and 4 start showing symptoms later in life, as far as my understanding goes. (But I'm not a medical professional, so please don't take my word for it.)

Then, more research showed another genetic mutation that causes SMA--a different type of SMA (or should I say another different type). As I understand it, this one happens in adulthood, too. There may even be others, but that's where I get lost.

Even within this mishmash, I believe there are exceptions ... or sub-types. In my case, I showed symptoms of muscle weakness as early as six months old. I was a "floppy baby." But the progression of my atrophy slowed considerably when I was about six years old. The word my doctors used then was "plateaued," but I'm not sure neurologists still use that term. I'll have to ask.

Anyway, I assumed that meant I had gotten as weak as I would and the active part of the "disease" was done. It had done its damage and hightailed it. I was wrong, as I learned when I was in college and shortly thereafter. Things can still go weak--and not at a steady, gradual pace, it seems to me. It's something more random.

Which doesn't matter, except it makes it hard to plan for.

New evidence--more anecdotal than from clinical research--shows that when people with SMA do live to an advanced age they can suddenly have a relapse, or let's say a resurgence or flareup. Basically, whatever muscles are left wear out. They age prematurely. Which to me sounds very much like postpolio syndrome. There was an article about postpolio syndrome in the past week. I don't think much has been done about post-SMA syndrome, if that's even an appropriate way to call it.

So even I, at 47, am not necessarily out of the woods yet! (Cue dramatic music.)

The point, once again, is not to define us (or ourselves) by our diagnoses.

As I've said before, I understand parents who are desperate for medical advice and treatments for their kids. I didn't used to. In fact, I used to resent it, the efforts my parents had made to "cure" me. But age and perhaps parenthood has given me a kind of wisdom. Or empathy, at least. I mean, I wouldn't want a parent who didn't do all he or she could for his/her kid's health and safety.

Yet to me, the better mission toward improving the lives of people with disabilities involves improving the societal stuff--fairness, openness, tolerance, inclusion, access and so forth. Those goals are more easily and quickly met, for one thing. For another, the pay off goes to all people with all types of disabilities--the old and the young, the dying and the living.

There was also new evidence published this week that some people who are said to be in a persistent vegetative state are actually more conscious--or at least do have more brain activity--than was previously thought. Many of us have suspected this. It's consistent with what I've heard from people I know who have come out of so-called vegetative states.

The connection here is that this shows yet again the limits of medical knowledge. Doctors are people too, and as such they can be wrong. There is often greater potential in the person than the medical establishment--if that's not too abstract and generalized a term--might expect.

Hey! This turned out to be longer than I expected!

If you like what you're reading here at all, I'm wondering if it'd help to ask you all to write NPR (or write NPR via this form) and say you want to hear more from Ben! (Sorry for the shameless self-promotion. But hey, we're all in this together, right? Hope so.)

Wherever you are, enjoy the snow, the rain, the Super Bowl, and whatever else is happening this weekend! And thanks for stopping by.

Of Harrison Ford, Brendan Fraser & Jerry Lewis

http://extraordinarymeasuresthemovie.com/

The new movie "Extraordinary Measures" has my mind running in circles.

No, this column is not a film review. Sorry.

I'm not actually writing about the movie itself, but what it calls to mind for me.

As engrossing as the Harrison Ford and Brendan Fraser flick may be, let's face it. It's at least partly about a medical breakthrough … about how even life-saving treatments are sometimes only possible with mega-funding. Especially for rare conditions, where the payoff of success--the profit potential--is dubious.

Sad but true.

Yet what's bugging me is the way this message echoes the Muscular Dystrophy Association's mantra. You know, "Send money or these kids will die!" Or words to that effect.

I've never liked that message, the implied threat. I feel it exploits kids with disabilities, turns them into one-dimensional objects of pity.

Well, guess what? MDA IS claiming a role in the true story on which "Extraordinary Measures" is based.

The true story involves the development of Myozyme, the only FDA-approved treatment for the rare, progressive neuromuscular condition called Pompe. Which affects one in 40,000 people, according to www.pompe.com--depleting their muscles until they become too weak to live. Myozyme isn't a cure, but it can slow Pompe enough to save lives.

It turns out MDA really was one of the behind-the-scenes funders of this life-saving intervention. I double-checked.

"Many organizations and individuals who worked over many decades on Pompe disease should take credit for Myozyme," Lori Gorski, associate director of corporate communications at Genzyme Corp., the Cambridge, Mass.-based pharmaceuticals concern that developed Myozyme, told me by e-mail. "The MDA helped support patients who took part in clinical trials of Myozyme and also sponsored early research in Pompe disease."

OK, but the irksome thing for me is this: For decades, one consistent primary theme of the disability-rights movement has been that we're fine as we are. We don't need fixing. We need acceptance, accessibility, respect, integration, education, employment ... NOT a mad search for medical miracles.

Of course, there's nothing wrong with medical interventions that extend or sustain or improve our lives. In fact, I have personally benefited from numerous scientific advances. Who hasn't?

And to be fair, some people DO want to be cured of their disabilities. Especially those in chronic pain or facing imminent death. Prominent disabled folks like Michael J. Fox and the late Christopher Reeve even lend their names to foundations devoted to finding cures.

But I can't help feeling that focusing one's energies on medical remedies for what are truly societal problems is, at best, a distraction--a misdirection. If you're fighting a disease, you're not advocating for disability rights.

Courtesy www.ADAPT.org

Am I unfair? Oversimplify-ing? Surely, it's possible to believe in disability rights AND support medical break-throughs at the same time. Yet I just don't know how a person with a disability can get on with his or her life if he or she is obsessed with finding a cure. Maybe it's me. But isn't the medical message intrinsically saying, You're not good enough as you are? It's not okay to have a disability?

(I think of the African-Americans who used to employ poisonous chemicals to try to straighten their hair and bleach their skin. Malcolm X himself did this, before learning it's the wrong way to rectify the problems of racial injustice.)

I've finally come to partial closure on this. It came to me when I was watching TV and there was a commercial for a new Alzheimer's drug.

What came to me was: there are so many disabling conditions! So many worthy targets for pharmaceutical research. How is one to choose which is most worthy of scarce R&D dollars?

It's great that these treatments exist, and more are on the way. But we're never going to solve all the medical problems. There will always be some people with disabilities. Polio is all but cured, for instance, but you can't stop people from breaking their legs while skiing, or contracting multiple sclerosis, or getting age-related infirmities.

The disability-rights movement seeks to make the world better for all people with any type of disability. Our mission is therefore broader than any clinical lab's can ever be.

After all, what happens to those facing chronic pain or imminent death while they're waiting for a cure? Or those who aren't interested in one.

What's more, a more tolerant, accessible and inclusive society benefits everyone.

Enough! I welcome reactions from readers.

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?

Cinderfella, a Humanitarian?

The funniest event in the long career of comedian/actor Jerry Lewis occurred on February 22, 2009, when the Academy of Motion Picture Arts and Sciences awarded him its Jean Hersholt humanitarian Oscar.

Here was my reaction:

What a joke! Only nobody is laughing.

Sure, the Oscar ceremony may seem harmless, fluffy fun. Yet to acclaim Lewis a philanthropist and promoter of human welfare is seriously offensive.

Of course, he's receiving the accolade because of his four-decades' work as chairman of the Muscular Dystrophy Association, the charity that purports to combat more than 40 neurological diseases and produces the Labor Day Telethon.

Never mind his frequent slurs against the disabled as "cripples," gays as "fags" and women as nothing more than baby-producing machines. After all, being smart-mouthed is part of his shtick. His politically incorrect patter might simply be outdated, not mean-spirited.

In fact, my primary objection to Lewis' receiving the humanitarian award is precisely because of his chairmanship of the MDA.

In the late 1960s and early '70s, when the MDA was headquartered in New York, I was its metropolitan-area poster child, one step away from being its national poster child. I could have been Jerry's No. 1 kid. But then came a full-page magazine spread of me, at seven, standing in leg braces and looking up through unruly blond curls with the overhead caption: "If I grow up, I want to be a fireman."

If? Though I was born with spinal muscular atrophy, one of the disabling diseases the MDA targets for research bucks and free doctor visits, and could never walk or stand on my own, my condition had "plateaued," as the neurologists say, and my life expectancy was normal. Plus, I did not want to be a fireman! I wanted to be a scientist. Told about the caption ahead of time, I crossed my fingers as the camera clicked.

Afterward, furious at being exploited, I told my mother I wanted to quit. I could no longer peddle pity, which I already knew was a problem in my life.

To be sure, by now everyone is aware that the MDA offends many disabled people by promoting pity over progress. It will continue doing this because pity, like sex, sells. And the money it raises doubtless goes to good causes—medical research and, for those without adequate health insurance, some wheelchair purchases and clinical visits. The MDA also hosts an accessible summer camp.

Yet it's never given even passing support to the cause of disability rights. It stresses medical cures instead of equal education and job opportunities. What's worse, by medicalizing people with disabilities it actually works against our full inclusion in society.

The cost to disabled people's status and self-esteem is far too great.

What's most shocking has been the Cinderfella star's hostility toward changing his or the MDA's marketing tactics. He dismissed protesters as a lunatic minority, and in a 1993 Vanity Fair profile he threatened the MDA's critics by saying, "I'll have you killed." Was that more sharp-tongued humor? Even more surprising, in the 1990s when I suggested to MDA's then chief executive, the late Robert Ross, that we settle our differences, he flatly refused. Hate mail ensued. Though Ross denied any part in it, I then received a letter that began, "Dear Mr. Mattlin, I don't know what you did, but at my local MDA meeting they told us to write you and tell you to stop doing it..."

Clearly, Jerry Lewis spearheads a charity that's far more devious than I'd ever suspected. Praising him for his public service is like giving Donald Trump a cash prize for humility. It just doesn't make any sense. It perverts whatever meaning the Jean Hersholt Oscar ever had.

More importantly, the Academy's ill-advised tribute to Lewis is an affront to those of us he and the MDA have exploited and offended for years. Indeed, it belittles the truly humanitarian effort to normalize disability, which Lewis has willfully worked against.

The Oscar committee really lost touch with reality on this one.
###