Tuesday, August 18, 2009

I AM the health-care debate

The health-care arguments and counter-arguments may aim at and ultimately impact everyone, but perhaps no one more than me. How can I make such a preposterous claim? Simple.

First, I have a pre-existing condition. I was born with spinal muscular atrophy, a severe, degenerative neuromuscular weakness. I've never walked or stood, and have limited use of my upper body.

Having a pre-existing condition is not so big a problem insurance-wise as it used to be. In the Clinton administration, new regulations were passed that basically require insurance companies to accept a subscriber with pre-existing conditions if he or she was covered by another insurance carrier in the past year. This made a big difference in my life. Still, for that coverage, I have to pay an arm and a leg. Yes, even if they're an atrophied arm and leg.

That's largely due to the second reason I'll be deeply affected by health-care reform. Because of my lifelong disability, I've never been able to land a real job. Despite graduating with honors from Harvard College 25 years ago, I've only received temporary, short-term assignments, never full-time employment. Thus I have to go shopping for my own health insurance.

When Obama opponents worry that he wants the government to take over health care, I don't listen. (A) It's not true. And (B), if it were true, I'm not sure that would be so bad. The government couldn't do a worse job than the for-profit insurance and pharmaceutical companies.

When they call Obama's plan Socialist, it's meaningless to me. Considering what rampant capitalism has done to our economy and our health-care-delivery system as I've experienced it, Socialism begins to sound pretty good.

But when the right wing cautions that a government insurance option will lead to rationing of medical services, that's when I take note. I know that when it comes to rationing I'll get the short end. Those of us with significant, continuous disabilities are a bigger draw on the nation's scarce health-care resources. I know that's true. If you're counting dollars and cents, keeping people like me alive and healthy just doesn't add up.

I know this, because I already feel the squeeze of rationing from the managed-care system we have today.

Don't get me wrong. I've been lucky. But the question of whether it's worth providing equal quality medical care for someone like me, a 46-year-old quadriplegic (who also happens to be a husband and father of two daughters), became dangerously clear last year, when I was hospitalized for gastrointestinal infection and septicemia. I was unconscious, inches away from death, I'm told. Before the doctors would perform their magic, they asked my wife, "Are you sure you want us to do this?"

In other words, should should they provide me with the same degree of life-saving intervention as they would anyone else?

So for me, the risks of bureaucratically controlled medicine and rationing already exist. I only hope the Obama plan--or whatever reform ultimately passes, and I do hope something does--will include a provision to guarantee equal access for all, including or perhaps especially the one in five Americans who has a disability.

Friday, August 7, 2009

Battling BS--and winning!

After four months, I finally got justice from Blue Shield. One of those minor victories, to be sure--but sometimes fighting with the insurance companies seems like a full-time job!

It all started last year, when I spent three months in the hospital in intensive care. When I emerged, my bedroom at home had been transformed into a sort of ward. Gone was my marital bed, replaced with an electric hospital bed and an inflatable mattress for my wife. There was a pulse-oxymeter monitor, a tube-feeding system, a ventilator, oxygen tanks and an oxygen concentrator, and so forth. All rented.

No fear. I'm all better now. All that's left is the final mopping up--i.e., the bills.

While Blue Shield did a great job of helping with the $1 million-plus hospital charges, my policy has a $2,000 limit on “durable medical equipment.”

Naturally, I passed that threshold in almost no time.

The $2,000 DME limit does, however, have two exceptions: diabetic care and oxygen.

So when almost a year later I amassed a bill from Lifecare Solutions for all that rented equipment totaling more than $8,000, well, even Lifecare asked if I could do anything to get more out of Blue Shield. I was on the case!

My appeals to Blue Shield were denied. Yet in the denials I learned about the $2,000limit and the exception for oxygen. Wait, thought! Some of these charges ARE for oxygen!

I immediately called customer service and pleaded my case. The woman there agreed that I made sense. The charges would be reprocessed. But nothing happened. So I called again. I was told my case had been turned over to someone else, a grievance specialist. I left her countless messages. More time passed. Finally I got hold of the grievance officer, who looked everything up and said that, yes, since I had been promised, and had waited so long already, she would approve reprocessing the claims. Eureka! Or so I thought.

More time passed. I called again to check the status. When I finally got hold of the grievance officer, she absolutely floored me. "We've reconsidered," she said

I asked why.

"The exception is for oxygen. Not oxygen tanks or concentrators, tubes, masks..."

"But that's how oxygen comes," I pointed out. "That's the packaging, basically."

She put me on hold. When she came back, she spoke like a child who had been told by an adult what to say. "We only count the oxygen for refilling the tanks, not the tanks and supplies themselves."

It was too absurd. I knew now what I had to do.

Next stop: the Blue Shield Web site, where I quickly located the name of the president and CEO. I guessed--well, extrapolating from another e-mail address I'd found--how Blue Shield's (or should I call it, BS's?) e-mail address system worked, and sent the head honcho a message. I've become very good at these sorts of messages. I was clear, as brief as possible, and firm. Make that threatening. I said if he did not resolve this to my satisfaction, I would have no choice but to pursue the matter with the appropriate state agency. (Since this was in California, perhaps that wasn't much of a threat.)

The next day came the response. Basically, I was right. The charges for oxygen would be reevaluated promptly.

And you know what? This time, they actually were. My total liability: $00.00

Sometimes we do have victories.

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.

Hair Growth

Last night, in what might be an act of supreme parental misguidedness, my wife and I watched a DVD of "Hair" with our kids. Now, I never saw the original stage version. I was too young, I guess. I remember talk about naked people on stage, how shocking, though not necessarily bad, that nakedness was. But when the amazing, joyful movie version came out in 1979, I did see it. I was in high school. I saw it with my dad.

Yes, my dad. He liked it, too. My high school friends thought that was funny, thought it was too subversive for parents. I bought and still have the LP of the soundtrack. I'd liked the music -- mostly its energy and spirit.

My wife remembered the film fondly too, and so we thought we'd share that joy with our two young daughters. All right, there was an ulterior motive.

You see, last week was their school's annual talent show. Kids volunteer to audition various acts. Though not all proposed acts end up in the final performance, no child who wants to be in is left out. Some get assigned to ensemble numbers. Our daughters didn't come up with an act in time to audition, so they got to be part of the opening number, which included 8 or 10 kids between the ages of 5 and 12. Two years ago, however, my older daughter did a solo act where she performed most of the "Modern Major General" from Guilbert & Sullivan's "Pirates of Penzance." She'd got the idea from the video we'd rented of the Kevin Kline version.

After this year's talent show, I began thinking how we ought to introduce our daughters to more musicals. Perhaps new ideas and acts would be sparked, but if not, well, they like to sing and dance and might enjoy them. They also enjoy having long hair -- especially my older daughter, who is 9 and whose hair is very long indeed. Plus she's very into the Beatles, and tie-dyed T-shirts are in with her crowd. So naturally, I thought of the "Hair."

It's rated PG. Would it be rated PG today, or something harsher, stricter? The references to drugs and sex were embarrassing for us parental types, to say the least. ("What's cunnilingus, Mommy? And what's LSD?") My wife and I found ourselves muttering things like, "People did things in those days because they didn't know any better." Or "Drugs weren't as bad for you back then. Now they are stronger, much worse, and you should never take them." I believe our girls know better than to copy what they see on TV. In any case, we tried to focus their attention on the nifty dancing, the spirit of the Age of Aquarius. (My favorite song, actually, is the energetic, nonconformist "I Got Life," a rallying cry sung in contradiction to the fussy, formal society lady's scolding, "You've got some nerve, young man!")

But beyond the sex and drug references, how much has changed in the 26 years since the movie came out -- let alone the 36 or so since the stage version? And perhaps more importantly, how much has not?

The hippies in Milos Forman's masterful adaptation are beautifully decked out in multicolored plummage. The men's long hair isn't ratty or tangled, and thus not "natural" at all. It's fluffy and feathery, more 70s than 60s, I suppose. They have no visible means of support, perhaps having more in common with today's homeless -- except for the clothes and hairdos. But I'd forgotten the ironic ending.

If you don't want the end to be given away, don't read the next paragraph or two. But I figure it's an old enough movie I'm safe.

Berger (Treat Williams), the lead flower child, partly on a lark and partly I think out of a sense of nobility or loyalty to his friend Claude (John Savage), frees Claude from boot camp for one afternoon so he can meet up with Sheila (Beverly D'Angelo) and the rest of the gang -- frees him by taking his place in the barracks. Berger cuts his hair, dons Claude's uniform, and attempts to fill in. His timing is unfortunate, though, because in that brief interval the entire unit is shipped out to Vietnam, and certain death. We see the young men in uniform, in perfectly straight lines, marching into a military airplane, filing into a vast darkness that represents death. As the movie fades to peace marches, people singing "Let the Sunshine in," we get a quick glimpse of the hippie gang without him -- 3 couples, a small boy and a baby now -- looking at Berger's grave. My 9-year-old daughter, already in tears because Berger, the coolest hippie, has to go off to war when he doesn't want to, suddenly finds it unbearable. "Oh God. They had to show that! I was hoping, you know, they'd show him coming back OK from war. But not that!"

In fairness, I have to wrestle with my own knee-jerk desire for my daughter to never cry or suffer at all. It is a sad scene, and her tears are appropriate. I know that. I know sorrow is a valid emotion she must learn to live with. And I must learn to live with her living with it. After she cried a while and we got the kids to bed, I started thinking: Did Berger have to die? Did he have to atone for his sins -- drug use, car stealing, and generally disrupting civilized life? All done with great charm, granted. Nevertheless, would you really want someone like him and his buddies invading your private party, say, and dancing on the furniture? Did he somehow deserve to die? If so, is the film version of "Hair" more of an old-fashioned morality play than its creators had intended?

In the end, however, I decided no, the film is not making a conservative statement. It's not saying that the wages of sin is (are?) certain death. Rather, it's about wartime. Death is commonplace in times of war. An everyday reality. As we know today. A lot of innocent people died in Vietnam and are dying now in Iraq. That's what the peace protests were about. Are about.

Look, we can't let our mourning -- our longing for the company of those who have died -- ruin our present, take over our lives. But at the same time, it's important to be disturbed by the randomness and meaninglessness of death, especially death for a cause that's questionable to some of us.

Still, I find myself wondering: Do our current peace protests against President Bush and the War in Iraq have the social consciousness of those during Vietnam? How willing are we to be radical, to face our society's unpleasant challenges?

Perhaps I'm not putting this well. Stay with me.

Another example: "Hair" has a couple of songs about race. Especially fun is the matched set, "Black Boys" and "White Boys" (yummy chocolate-covered treats, delicious and smooth as silk, respectively). Could you get away with something like that today? In our political correctness, we're supposed to be totally colorblind. We recognize the contributions of different cultures -- African, Asian, Latin -- but do we dare even acknowledge the potential tensions in race relations? It's not cool even to talk about it like that anymore. All that's supposed to be in the past. The bad old days before Civil Rights. Well, that's good, but how much are we burying our heads in the sand, smug in the belief that we've put all those tensions behind us? That we're not the racist culture we used to be. We're enlightened! All that stuff is quaint. Or are we just avoiding the issues, allowing them to smolder beneath the surface?

I'm not entirely sure our kids were ready to deal with any of these issues, especially not in light of an overall happy musical about dancing around with long hair. But maybe it's not so bad for them to have to be aware of the struggles that have come before and are still relevant today. The struggles for freedom and liberty, for free expression, for love and connecting, which seem to go against the struggles for civility, fidelity, a sense of order. I worry that our society has gradually become as repressive as, if not more repressive than, the bad old 1950s. More inclusive, perhaps, but how comfortable are we at honestly facing the still-current, ongoing realities of inequality, injustice, war, racial friction?

As the saying goes, the more things change the more they remain the same.

What do you think?

Thursday, August 6, 2009

In Foreign Hands

Last summer, the day before a family trip to Washington, DC, my motorized wheelchair stopped working. I'd been planning and replanning how best to pad and stow it for the long plane ride from Los Angeles. Airlines are notorious for turning expensive, complex wheelchairs into pretzels. But this I could not blame on the airline or a loose plug, bad batteries, flipped circuit breakers or anything else easy to fix. The glitch was electronic and microscopic.

I've used a wheelchair my whole life because I was born with a neuromuscular weakness similar to muscular dystrophy. I never walked or stood. Pushed everywhere till I was 10, when I graduated to a rickety motorized chair that could be used only indoors, I didn't gain full-time autonomy of movement till I left for Harvard College in 1980.

Now that I'm 45 and my hands have become too weak for a standard wheelchair joystick, I drive with a tiny, ultrasensitive joystick I manipulate with my mouth. The mouth-stick was a godsend, even at $2,000 out of pocket and special-ordered from Belgium. Now it was dead. There was no chance of getting it fixed or replaced in time for the trip, and nothing else would do.

"Should we postpone?" I asked my wife, who would bear the brunt of pushing me in the notorious Washington summer humidity.

She frowned. We had pre-bought museum and theater tickets, made reservations and social obligations. She said if I was willing to use my old manual wheelchair, which I keep in the closet as backup, and is lighter and more portable but less comfortable, we should go ahead and make the best of it.

Our trip went off without further hitch. But my attempts to reach the wheelchair vendor who had sold me the chair failed; the place was out of business. So immediately upon returning home I diligently looked up other options. I even e-mailed the joystick manufacturer in Belgium. No luck. Finally, in desperation, I tried a local joint I didn't really trust. It was basically run out of a family garage.

"Okay, you come over and we have look," the voice on the phone interrupted before I could fully explain the complexity of my situation.

With nothing to lose, I had my aide drive me over right away. When we got there the plain brick storefront appeared to be closed. But Middle East-tinged music wafted out of a radio somewhere on the other side of the garage gate.

"Hello?" we called out.

After a moment, a bearded young man in a gray cotton sweater and glasses emerged, opened the gate and ushered us inside. His English seemed good, and I explained my problem. The young man furrowed his brow and then started fiddling with my chair, removing the joystick and examining it as closely as a jeweler might—or as if he'd never seen anything like it before. I confess to thinking, "Oh God, he's going to break it!" before remembering it was already broken.

"One minute, please," he said before disappearing to another room with my precious component in hand. Feeling more helpless than ever, I hoped I hadn't made matters worse. When he returned he said he might be able to fix what was undoubtedly a short, though it could take hours of trial and error to find it. I agreed to call him later that afternoon. What were my alternatives?

Before leaving, I asked the young man his name.

"Mohamed," he answered.

Mohamed. I had supposed—hoped—the place was the home business of an immigrant Israeli family or, more likely, Persian Jews who had escaped Iran when the Shah fell, like so many parents of my children's school friends. But no. And this Mohamed was not African-American, either. This was the real deal, the Middle Eastern variety of Islam. The terrorist variety. My mobility was in his hands.

I have always been an urban dweller who prides himself on a cosmopolitan open-mindedness. I've hired personal-care aides from all parts of the world, learned to communicate the most intimate details of my life to people with a variety of accents and customs. But I suddenly panicked. It was one thing if this place was the health-care equivalent of a gypsy cab, say, but quite another if it was even remotely associated with the unthinkable.

I was in my van when Mohamed ran up. "Wait! I found some loose connections. May I try it?"

He reattached the piece on the spot. The chair worked. For a moment, anyway. The connection was still faulty, but could be jury-rigged until a replacement arrived. I was no longer stuck. It felt miraculous. I told him so.

Mohamed smiled at my pleasure. "Well, it seems God loves you," he said.

Disabled people are constantly prayed for and blessed by strangers. I have learned to be leery of uninvited religious overtures. This time, however, I felt so profoundly grateful for being "saved," as it were, from interminable immobility that I decided not to take offense. "And God loves you, too," I replied.