Wednesday, June 18, 2014


(*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

Saturday, February 22, 2014


The realization came in the course of searching for a new cushion for my wheelchair.  I use a wheelchair every day, all day long, and have my whole life.  Born with spinal muscular atrophy, a degenerative neuromuscular delight, I've never stood or even tied my own shoes--but I know a thing or two about wheelchairs and have bought cushions before.  This time turned out to be a fiasco.
To be sure, I could easily have purchased any number of standard cushions.  Your basic off-the-drugstore-shelf variety, however, wouldn't provide the support and comfort I sought.  My skinny, bony backside requires something more high-end and expensive.
From magazine ads and Web chatter I knew there were several new types of cushions on the market.  Until five years ago I used a fancy kind of memory foam.  Then I spent a grueling three months in the hospital, largely due to botched surgery, and developed my first (and so far only) pressure sore—a big, ugly, open wound on my tailbone.  When I at last returned to my wheelchair, my doctor recommended an air cushion to promote healing. 
I never really liked it, but it's been okay.  Then, recently, my right leg has been falling asleep.  So it's time to consider a change. Gel-filled? Hybrid foam-air? Latex-topped?  I called the local wheelchair clinic, which turned out to be not what it used to be.  I was asked for a doctor's prescription before making an appointment.  Which I did.  At the appointment, after presenting my insurance card and proffering my $20 co-pay, I was led to a depressing space where a beleaguered employee reviewed my paperwork and declared I needed to speak to someone else, who would call me in a couple days.  "Let me make sure we have your insurance information," he inserted before I disappeared. 
Only after driving away did I begin to think about how Blue Cross was going to be billed for a consultation I hadn't actually received.
But that was just the beginning.  Days went by, with no phone call.  So I called and emailed.  When I finally spoke to the seating specialist, she immediately suggested I might be underestimating the problem, wanted me to consider getting a whole new chair and possibly a new bed!  "Let me look into cushions first," I insisted.
She then proceeded to tell me she'd have to check my insurance before we could talk further. 
But that familiar insurance drill is only part of the problem.  First, there's the ridiculous, dim-witted, inefficient bureaucracy for even the simplest procedures such as choosing a wheelchair cushion.  More irksome still is the arrogance--the way we the customers/patients are so often treated as "cases" or faceless accounts, treated as kindly as witless children, but never respected or listened to.
I wanted to shout, "I don't care how trained you are—I've used a wheelchair for nearly half a century.  I am the authority here!"
That's when it struck me: I was experiencing a microcosm that illuminates the macrocosm: the plain, simple truth of what's wrong with our health-care system. 
It's not Obamacare, frivolous malpractice suits, big pharma, the declining number of doctors, the "brain drain" of young professionals who flee overseas, the aging population, nor any of the other bĂȘtes noires that experts cite.  It's something much more prosaic and closer to home.

If the seating specialist has something useful to contribute, she deserves to be respected and paid for her time, of course.  Yet if I go into a shop--even a high-end one--I don't expect to negotiate for the sales clerk's attention; his or her compensation is rolled into the purchase price of whatever I buy.  Why should choosing a wheelchair cushion be any different?  Why are we treated as something less than customers?
I concede that these professionals might have ideas I hadn't thought of.  That's why I contacted them in the first place.  I'm willing to listen.  I only ask that they give me the same courtesy.
Granted, this is but one little example.  Still, if this sort of condescending, time- and money-wasting nonsense goes on on such a small scale, imagine what's happening when there's real money involved!
Yes, there are bigger concerns—outrageous malpractice suits, greedy drugmakers, physicians who play God, and so forth.  But let's not be blindsided to the everyday, small-time pilfering and patronizing to which people like me have grown all too accustomed. 
Perhaps the solution to what ails our health-care system lies not from the top down but from the bottom up.  Tip O'Neill used to say all politics is local.  Maybe the same is true here.  You want to know what's wrong with the system, look no further than your neighborhood wheelchair dispensary.

Friday, November 15, 2013


Several years ago I launched this blog as a way to reflect on recent experiences or esoteric discoveries from which I'd learned something useful, something to remember for future endeavors. 

Finally, at long last, I might actually have a post that fits that original mission.

Yes, this is another story about health-insurance reform.  I've been a supporter.  I thought I knew all about it.  I thought we'd have no problems.

Blue Shield told me it would automatically convert me to a new plan that's not only better but would save me about $200 a month!  It sounded so good, I was going to add my wife and daughters (who have been covered by Aetna, which is leaving California).

Then I heard something on the radio.  It suggested checking your new policy's network of physicians to make sure your doctors are still included.  I hadn't thought of that.

Sure enough, the new and better plan had found a legal way to skimp--by shrinking the "network."  None of my doctors would be part of it.

When I called Blue Shield to double-check, I got a confusing answer.  "I don't know," said the customer service agent.  "Our computers might not be up to date.  Call your doctors' offices."

So I did.  The doctors' offices reassured me that they WILL still be part of the Blue Shield Preferred Provider Network.  No worries, right?

Still, the discrepancy bothered me.  I particularly didn't want to be recommending Blue Shield to my family if it was going to suck.

I called Jeni Blumenthal.  She's a local insurance broker.  Why didn't I call her sooner?  Well, I'm the kind of guy who goes directly to the insurers, that's why.  I never used a travel agent either.  (You older folks may remember when there used to be travel agents.)

Jeni instantly understood my problem, practically finishing my sentences for me.  "UCLA--" which is the group most of my doctors are part of "--is in the Blue Shield Preferred Provider Network only for group plans, not individual policies," she explained.

Aha!  In one sentence she had solved a mystery that had been dogging me for weeks!

Blue Cross, on the other hand, would cover the UCLA doctors but did not offer a PPO plan in my area, meaning if I went out of network I'd have to foot the entire bill.  Also, some of my doctors are affiliated with Cedars-Sinai, which I guess is so far away (half-hour drive, in Beverly Hills) that none of the local carriers would cover them!

But, she said, CIGNA was going to be offering a plan in my area that would include all of my doctors.  Details such as price won't be released until next week.

That's assuming, of course, that Washington doesn't change everything before then.  Honestly, health insurance has become like the weather in Boston.  If you don't like it, just wait a few minutes and it'll change.

So stay tuned!

Wednesday, September 18, 2013


In the last week of August, just in time for Labor Day, Vice President Joe Biden announced that the Obama Administration would pursue requiring federal contractors to fill at least 7 percent of their workforce with people with disabilities.

He was speaking at the American Legion convention, but the news resonates for all disabled Americans, not just the veterans he was addressing.

The specific target of 7 percent will give teeth to what has been a vague affirmative-action goal since President Nixon signed the Rehabilitation Act of 1973.  It follows upon President Obama's earlier promise to make the federal government itself a model of equal opportunity employment.  But this additional step is particularly meaningful because it fulfills a 40-year-old bipartisan promise to, as Biden said, "help ensure equal rights and employment opportunities for veterans and people with disabilities."

I was not yet 10 when the Rehab Act became law, but I was already a wheelchair-user.  I was born with a neuromuscular condition called spinal muscular atrophy, which rendered me quadriplegic.  The Rehab Act was the first far-reaching piece of legislation defending the rights of folks like me.  It took four more years, and nationwide protests and sit-ins, for one of its most important provisions—Section 504, which requires equal access for the handicapped in federally funded institutions and programs—to become codified.  As a result, I was able to attend almost any college I wanted.  At least in theory.  The law went into effect in 1980, the very year I graduated from high school.

Of course, that transition wasn't easy and this one won't be either.  At the time, some universities were frank about the challenges of accommodating a student in a wheelchair.  "It'll be damn difficult," one admissions officer told my father.  Others bent over backwards to avert a lawsuit, even accepting me before I had actually filed an application. 

I ended up at Harvard, one of its first—if not the first—quadriplegic freshmen admitted.

After all these years I assumed that the Rehab Act had done its job.  It had gotten stuffy old places like Harvard to accommodate students like me.  I did not know about federal contractors, about Section 503.

Some might say that in clarifying and enforcing Section 503, which merely required federal contractors to "develop and implement a written affirmative action program," the Obama Administration is fixing a problem that didn't exist.  To me, though, it's more accurate to say the president went out of his way to bring people with disabilities into parity with other minorities and women.

Indeed, the issue was barely on disability-rights activists' back burners.  A hotter concern has been the UN's Convention on the Rights of Persons with Disabilities, to safeguard disability rights internationally.  Or how to stop Medicaid from shunting recipients into expensive, neglectful nursing homes instead of allowing them home-based, self-directed care--a cause the president seems to favor, in his support of the Olmstead ruling.

But employment disparities should not be overlooked.  In June, the U.S. Department of Labor estimated that unemployment among employment-age people with disabilities was 14.2 percent, almost twice the 7.6 percent for the rest of the population.

Granted, some disabled people may be easier to employ than others.  In fact, an earlier Labor Department proposal for enforcing Section 503 called for a lower threshold of just 2 percent for the most severely disabled.  But we have to face the fact that there is still unwarranted prejudice.  Even with my Harvard degree, I never could find a job.  Instead, I took freelance writing assignments.  Voice-recognition computers certainly upped my productivity.  I'm using it to write this.

So it might take a little creative thinking, flexibility and technology to meet these employment goals.  Is flex-time an option?  Can some of the work be performed at home?  People who live with disabilities tend to be expert problem-solvers and self-starters.

My hope is that the new standard will help people with disabilities take control of their own lives and reduce their dependence on government subsidies. More than that, I hope it will help show the nondisabled coworkers what we're made of.  After all, the point of diversity and full inclusion is not just to benefit the marginalized.  It is to create the kind of synergies that can only come from expanding one's boundaries, from welcoming the new and different, and allowing the cross-fertilization of ideas. 

It's unfortunate this important piece of civil-rights progress was overshadowed by the following day's tributes to the 50th anniversary of the March on Washington.  It's surely something Martin Luther King would have supported.

Tuesday, August 20, 2013

The New "Ironside": Good or Bad for Crips?

When NBC announced a reboot of “Ironside” was coming this fall, you might have dismissed it as just the latest Hollywood rehash.  But for wheelchair-users like me, it’s either cause for celebration or an omen of despair.

The old Raymond Burr series about a tough-as-nails paraplegic ex-police chief was never exactly enlightened.  But as a disabled kid in the 1960s and 70s, I clung to it with near religious fervor.  For me, Chief Ironside was a model for refusing to be defined by others’ limited expectations.  I came to rely on him as a kind of lifeline.

I never could walk or even stand, but like the hardboiled cop I didn’t want to be underestimated.  I felt determined to live a full, active life--to strut my stuff.

So I welcome the return of “Ironside,” but with a note of caution.  Will the producers screw it up?

To be sure, the original program had flaws.  It never talked much about the Chief’s disability.  Yet that was partly what made the portrayal so appealing.  It was simply an aspect of his character.  It didn’t define him, just as mine wouldn’t define me.  I knew his fictional physical limitations were different from my real ones.  But for me, just seeing a guy in a chair who was fearless and in charge was revelatory and redemptive.

The old show had other shortcomings, too.  Ironside rarely had to explain himself to others, as I was always having to do.  “I can’t walk,” I would answer nosy strangers.  “I was born this way. … It’s a neuromuscular weakness called spinal muscular atrophy.”  On “Ironside,” no one asked because everyone knew.  He’d been shot in the line of duty. His reputation preceded him.  

He also had a knack for materializing on the upper floors of buildings with no elevator, and apparently never had a problem finding an accessible bathroom.  Late in the series, he even drove his own van without adaptive hand controls! 

Nevertheless, the show introduced me, and much of the world, to a wheelchair-accessible van, complete with automatic lift.  Ironside's office had a built-in ramp and speakerphone, too.  I didn't have any of that, and you'd better believe I wanted it all.  The empowering paraphernalia had the effect of magic, especially compared to the other prominent image of disability on TV in those days--the pitiful kids on telethons.

Granted, my memories are hopelessly tinged with nostalgia, as will be my appraisal of the new version.  I’m bound to tsk-tsk every little difference—such as moving the series from San Francisco, a source of endless plot lines in the days of Haight-Ashbury hippiedom, to New York.  And switching the composition of Ironside’s hand-picked team, if not eliminating it altogether, seems a no-no.  In the original, his crew included one of TV’s first female police officers (two of the first, actually, considering a cast change in year 4) and a smart young African-American man who frequently faced down racism as he rose from the Chief’s assistant to a full-fledged attorney.

Not to mention the casting of the lead role.  Instead of a heavyset, gruff-yet-avuncular old white guy, we now have his opposite in buff, middle-aged Blair Underwood (who, like Burr, became famous playing a TV lawyer). 

But none of that matters.  The new show could still win me over.  Yes, some will complain about a nondisabled actor once again portraying a paraplegic.  Even that doesn’t faze me, though, if he plays it well.  And by well, I mean realistically.

Indeed, a touch more disability realism than the original managed would be most welcome.  No, it shouldn’t overwhelm the story.  We don’t need to see Ironside’s bladder and bowel procedures.  This isn’t a documentary.  But every now and then, couldn’t the new Chief wrestle with equipment failure, pressure sores, strangers’ stupid questions, or architectural barriers?

Let’s face it: Simply presenting a tough guy on wheels isn’t enough to impress anyone anymore.  Not in the age of Stephen Hawking, “Push Girls,” or “The Sessions.”  Audiences are smarter than they used to be.  To get the willing suspension of disbelief, you've got to infuse some convincing details.

Better still, the new show could have a social conscience.  It could address the economic and political inequities people like me face. 

But let’s not get carried away.  If it doesn’t do any harm, that might have to be good enough.  Of course, I could be pleasantly surprised.  I never imagined we’d see so many people in wheelchairs riding city buses as we do today, or that Michael J. Fox would return to prime time with Parkinson’s (as is happening this fall).  Disability inclusion has come a long way. 

Perhaps the original “Ironside” helped make this progress possible.  Its new incarnation could play a similar role, as long as it recognizes its potential to open people’s eyes to life’s possibilities.

Sunday, June 16, 2013


In retrospect, wish I had spoken more about disability history—the importance of teaching kids with disabilities about their place in the continuum of progress, imparting them with a sense of pride and justice.  The big picture, to me, is what's most inspiring.
But at the Families of Spinal Muscular Atrophy conference, parents seem so desperate for solutions, for coping strategies.  Understandable, to be sure.  Yet something is lost if you don't see SMA as part of the normal variety/diversity of human life.
Maybe next time…
Anyway, here are the remarks I prepared for my two-minute introduction.  Didn't get to use my cheat sheet, though, because there was no convenient place to prop my paper! So I winged it.
This is what I would've said– – –
I'm delighted to be here today, and delighted you're all here, too.  What we're going to talk about is very important to me, very close to my heart.
It's nice, too, that in this crowd I don't have to define "spinal muscular atrophy."  You all know what it is.  You probably know the statistics and understand the science better than I do!
But my message may surprise you.  You see, I don't want to be an inspiration. People keep telling me I'm inspirational, but that's never been my intention.  I've always just sort of lived my life the best I could with the resources I had.
I'm a married Harvard graduate, father of 2, freelance journalist, NPR commentator and, now, book author. I am also, as my late friend Harriet McBryde Johnson–who also had SMA–put it, "in the first generation to survive to such decrepitude." 
Not until I was in my 40s did I begin to reflect on HOW I'd gotten where I am. I mean, if it wasn't my heroic courage & pluckiness, what on earth was it? 
Well, I had 2 key advantages:  First, from my parents I had this wild idea that I was entitled to everything anybody else was. Second, progress was on my side–medical progress, technological progress, and civil-rights progress.
But perhaps most of all, what's buoyed me onward is the community of people with disabilities, this community of SMA families. So thank you for having me. I welcome your questions.

Monday, May 27, 2013


Recently, the New York Post and CNN reported that wealthy families were hiring people in wheelchairs to pose as family members so they could cut the lines at Disney World.  All I could think was, you mean now I'll have competition?

I've used a wheelchair my whole life--I was born with spinal muscular atrophy--and though I have taken advantage of Disney's queue-jumping policy for my kids' sake, I've never taken money to pretend to be someone else's dear old brother/uncle/son (I'm too young to be taken for a grandpa, I hope).  That doesn't mean I haven't thought about it.  Why not use the Magic Kingdom's charitableness to recoup a little of its outrageous ticket prices? 

Obviously, if the reports are true and some greedy soul is effectively pimping out my fellow wheelchair-users, that's terrible.  These so-called tour guides should band together and pocket 100 percent of their ill-gotten gains!  That, of course, is assuming they are genuine wheelchair-users and not poseurs.

Frankly, I've never understood Disney's policy.  Why let people like me go first?  I can understand not wanting the enfeebled to stand waiting interminably—after all, they might pass out, and think of the lawsuits that would ensue!  But (a) I'm not standing; I'm in a wheelchair, a relatively safe and restful perch, and (b) I can't actually go on most rides anyway!  With a few exceptions, such as "It's A Small World," they aren't wheelchair-accessible.  So why should someone like me take up line space at all, let alone be fast-tracked to an attraction he can't participate in?

Nevertheless, rather than sit in the cool shade and munch snacks while my poor overheated wife and kids line up for hours in anticipation of the transitory joys of "Pirates of the Caribbean," say, I invariably join them, making sure to be seen by a park employee, who will promptly usher us ahead.  I figure if nothing else I'll earn "cool dad" points.  Then, at the boarding place, I feign disappointment when I can't climb into the little boat or cart or whatever, even though I knew I couldn't.  I guess I'm afraid that if I don't look surprised and hurt, the Disney "cast member" will send us all back to the end of the line.

It may be shameful to admit, but taking advantage of one's disability—or rather, of other people's solicitousness, even pity—is one of the great benefits and joys of life on wheels.  When I was a kid, before the disability civil rights movement ruined everything, I could sometimes get into movies for free.  At major sporting events and Broadway shows, tickets often ran me no more than $2.  It was charity, pure and simple, though I told myself it was merely because I wasn't taking an actual theater seat from another patron.

Still, when sweet old ladies on the street would offer to buy me candy or a cookie, it was decidedly creepy.  I never once said yes.

For my family, this kind of cloying generosity was a great source of laughter when I was growing up.  My older, nondisabled brother and I used to joke that if we were ever orphaned, or simply needed some extra spending money, we could clean up by begging on street corners.  He would accost passersby while I acted as pitiful and, well, handicapped as possible, moaning and drooling and contorting my face.  Not unlike Frank Langella's shouting "epilepsy!" to collect rubles from the unwary in Mel Brooks' "The Twelve Chairs," which we hadn't even seen yet.

Even while enjoying the laughs and the occasional freebies, I always knew it was wrong.  I had to tell myself I was being treated like a movie star, a VIP, instead of someone so other that people had to step aside to let me pass. 

Like it or not, I know now that it's worth paying full price if it means having equal access.  This is why, after my last trip to a Disney park not long ago, I wrote a letter to management protesting the lack of accessible rides.  Why should I pay full freight when I only have access to fewer than half the attractions?  I was told that the company had done all it could to accommodate, and besides, just the pleasure of being in the Disney milieu was worth the price of admission. 

Really?  On balance, I can't help but salute those who would turn the Mouse's cockeyed compassion on its sizable ear.  Besides, according to press reports the ring operates only at Disney World in Florida.  I'm in Los Angeles.  Disneyland in nearby Anaheim is ripe for the plucking.