BRIGHT LIGHTS, BIG DISAPPOINTMENT *

(*With all due respect to my good friend @JayMcInerney)

You are not the kind of guy who would be in a place like this at this stage of Obamacare.  With your biography, you could've been its poster child, but now you're in danger of becoming one for the opposition.

By now, everyone has an Obamacare story to tell.  While the Administration touts the 8 million Americans who signed up, many for the first time, others grumble about bureaucratic nightmares, abrupt cancellations, or online-exchange glitches. You've suspected the truth probably lies somewhere in the middle, but now you feel you've been had. You—an informed consumer who advocated for such reforms for years.

You hate yourself for writing this, providing fodder for antagonistic Republicans.  It gives you what psychologists call cognitive dissonance.  As a self-employed professional with pre-existing conditions up the wazoo—quite literally, actually—you craved the basic fairness of the Affordable Care Act.  Before it, your only option was an outrageously expensive PPO that paid 70 percent of in-network doctor bills and 50 percent of so-called "customary rates" for out-of-network services.  For this you forked over the princely sum of $10,408.80 a year in premiums. 

But as a "high-risk patient," you were grateful for what you got.  You were born with a neuromuscular weakness called spinal muscular atrophy; you've never walked or stood, and your lungs are so weak that a bad cold could kill you.  People like you can't be too choosy about their health insurance.  Employers rejected you, though you'd graduated from Harvard with honors.  The only work you could secure were freelance magazine assignments.  As an independent contractor, you had to secure your own coverage.  But when you aged out of your parents' policy, in the late-1980s, you couldn't buy health insurance at any price.  So you joined organizations—the National Writers' Union, the Media Alliance, etc.—just to score a group plan that didn't require a medical examination.  Still, carriers kept dropping you.  They called you too expensive.

The Clinton Administration brought passage of the Health Insurance Portability and Accountability Act, which enabled you to purchase insurance without any pre-existing-condition exemptions if you had proof of prior coverage.  A terrific help, this is how you ended up with the pricey PPO.  You clung to it for years. 

But last October you received word that it was ending, thanks to the ACA.  No worries.  You would be automatically shunted into a new policy that slashed your premiums in half and cut your co-pays to practically nothing.  Even when the application process faltered, you defended the new order.  Friends and family held you up as an example of its success.

Granted, your gratitude waned when you learned the new, cheaper plan excluded your local hospital and its doctors.  But soon, undeterred, you found a competitive policy and made the switch before the cutoff date.  Progress is always bumpy, you told yourself.

You were so innocent.

The weeks that followed were filled with obtaining authorizations for ongoing prescriptions.  Some had to be transferred to a new mail-order pharmacy.  Small hassles, to be sure, but you believed this was a phase that would pass.  Only when your primary physician suggested you consult a specialist—a cardiologist for a routine scan--did a true sense of panic dawn.   "The doctor won't see patients with any of the new plans," the receptionist politely but bluntly informed you. 

Ditto the second and third cardiologist referrals.  Next, your beloved urologist, whom you found only last year after rejecting several others, said essentially the same thing.  Even your long-time gastroenterologist and colorectal surgeon (six years ago you had a colectomy, hence the wazoo reference) blackballed you.

It seemed impossible.  You had been so careful, so sure.  A physician friend explained that the new plans are simply not paying doctors a fair and adequate rate.  Doctors who accept them are losing money.  This is how insurers are making up for what they've had to give up under Obamacare.  Soon, your friend cautioned gloomily, many doctors could go out of business.  It could become practically impossible to find any doctors willing to practice.

You do not believe it.  Obamacare couldn't be the end of medicine as we've known it.  Yet for now, you have to choose between seeing specialists you don't want or paying full-freight for ones you do.  In which case, why have insurance at all?  Then you remember: you don't have that choice anymore.

You are stuck—stuck with a cheap plan that doesn't serve your needs.  It doesn't matter that you went for the "platinum" option, foregoing tax breaks you might have received from the state-sponsored exchange.  It's still no good.  You even asked your broker if there's any kind of supplemental, stopgap policy you could purchase.  She said no.  You can't change anything until the next open enrollment in mid-November. 

Will there be a better choice then?  You can only hope.

Ben Mattlin
Author of Miracle Boy Grows Up: How the Disability Rights Revolution Saved my Sanity
Los Angeles, CA

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!"

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.)