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.

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

The Disability Revolution Begins -- Part 22 of "Miracle Boy”

Back by popular demand--ha!--
Here's the next section...

THE BIRTH OF THE MOVEMENT THAT CHANGED THE WORLD, or MY BIG FAT ATROPHIED PREADOLESCENT BODY

 Nineteen years earlier, in 1953, at the age of 14, Roberts contracted polio and found himself unable to move, in a hospital bed, using an iron long (portable ventilators hadn't been invented yet). There, he made a discovery similar to the one I'm making in the early-70s—the discovery of a new kind of freedom. Here's how Ed Roberts describes it years later:

I decided that I wanted to die. I was 14 years old. Now, it's very hard to kill yourself in a hospital with everything set up to save your life. But the mind is a powerful thing. I stopped eating. They started to force feed me. It was really demeaning. I dropped to 54 pounds.

My last special duty nurse left, and the next day I decided I wanted to live. You see, that was a big turning point. Up until then, these nurses were available and doing things for me around the clock—I didn't have to make any decisions for myself because they were always there. When they all finally left, that's when I realized that I could have a life, despite what everyone was saying. I could make choices, and that is freedom. I started to eat again.

Roberts and his crew, who call themselves the Rolling Quads, are fighting against a system in which institutionalization of the disabled is still widespread. Some states go so far as to forcibly sterilize people with certain disabilities. Some prohibit marriage for the genetically disabled, for fear of procreating hereditary conditions like mine. Visibly disabled people are actually barred from appearing in public in cities such as Columbus, Ohio—Dad's hometown—until 1972 and Chicago until 1974, under what are collectively called the "ugly" laws because they target anyone perceived as unattractive, for being a disturbance of the peace.


The movement to change all this and more is rising in discrete pockets all over, inspired by Black civil rights. Closer to home, in New York City, at the very same time though unbeknownst to me, Judith Heumann organizes a group called Disabled in Action to push for equal-access legislation. If Ed Roberts is the father of disability rights, Judy Heumann is the mother. She, too, is a polio survivor and wheelchair-user. In the 1950s she went to court to win the right to attend New York public schools, and in the 60s sued for the right to teach in them. But I'm not aware of any of this at the time. I have nothing to do with other handicapped people because the only ones I've seen are the kids on the Jerry Lewis telethon or in the special schools or summer camps I'm sometimes threatened with having to attend—the ones who are treated patronizingly, as if they haven't a brain in their heads. I know I'm not like them, so I think I have nothing in common with any other people who have disabilities. ("Disabilities" is already becoming the correct word in some circles, but not mine. I'm still handicapped.) I'm ignorant that others are making or have made the same sorts of discoveries I'm struggling with.


Feeling alone in my struggle, I become unsure of myself, unsure of whether I'm moving forward or backward. At ten, I'm increasingly conscious of my physical limitations. I may even be growing slightly weaker, though it's not obvious except I don't seem to be burning calories as effectively as I used to. I gain fifty pounds between annual doctor visits. I have to buy clothes measured in "husky" sizes. With my hopelessly curly, sandy-colored hair, I look more like a sybarite Bacchus than an angelic Cupid—though whether my fatness is a cause or an effect of my growing insecurity I won't hazard to guess. Doubtless my parents split-up is a contributor.

I begin emulating Chief Ironside's grouchy, hard-boiled demeanor from TV, if not his girth. Not a pretty combination, the softness on the outside mounting an ineffective pillow against a molten hardening within.

***

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.

***

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.
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