TAKE YOUR SEATS

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 bêtes 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.
 
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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.

"Miracle Boy" Grows Up" (an excerpt & commentary)

A long story in the New York Times today (July 4, 2010) about an Iraqi war soldier who became disabled in combat and is learning to reinvent his life. Okay, that's an oversimplification of a complex, touching article. But at some level it is without a doubt a disability tale--and that's where I come in.

Usually, stories of heroic overcomers turn my stomach. First of all, they are clichés. Also, sometimes it seems that anyone who actually lives a life with a disability is treated as heroic, inspirational, miraculous, and so forth. Perhaps we are, but I like to think that's more because of coping with a world that isn't made for us, doesn't get us or welcome us. We're not amazing simply because of having a disability.

There IS a difference.

Still, injured veterans' stories are pretty incredible. (Injured anyone's, for that matter.) The fact is, disabled veterans have always been a huge, if unintentional, impetus to disability rights. Prosthetics and even motorized wheelchairs were invented specifically in reaction to the sudden swell in the disability population caused by wars.

All of which is a lead-in to this excerpt from my book-in-progress:

    Mr. Snuffles, as I secretly call him, has a musty workshop on the second floor of a walk-up on the Upper East Side. Dad has to carry me bodily up the stairs.


     Once there, Dad lies me down on a vinyl-topped examination table, where I have nothing to do but stare at an assortment of fliers posted on the wall. "Four out of five dentists recommend sugarless gum for their patients who chew gum" one of the signs informs me.


     I wonder what it's doing in a prosthetics and orthotics facility!


     Decades later I learn that the earliest recorded example of a prosthesis is an iron leg made for one Queen Vishpla, an Indian warrior in 3000 BC, who was amputated in battle yet returned to fight again with her new hardware, according to an ancient Sanskrit text.


    Why isn't something like that, emboldening info about the historical importance of assistive technology, posted here?


     … I have a new motorized wheelchair—my first—which is too heavy to get up the school steps, but at home I love to zoom around, especially fun in my building's labyrinthine basement.


     Gary and I play there after school, staying clear of the housekeepers who do laundry and the maintenance workers who have an office down there as we explore the myriad dark passages and commodious storage lockers, pretending we're on a mystery investigation. It's taken me a while to get an electric wheelchair. They've been mass-produced since 1956, when Everest and Jennings rolled the first one out of its California factories, improving upon designs putatively sketched by George Westinghouse in the late-nineteenth century and British engineers during the First World War, then perfected in the early 50s by a Canadian inventor named George Klein, primarily for World War II vets—demonstrating again the connection between war and disability progress.


     The first E & J power chairs were notoriously slow, but in the early-70s they become the vehicle of choice for active quadriplegics—brandished by Ed Roberts and his trendsetting crew in Berkeley. The only reason I didn't have one before is Dr. Spiro, my neurologist, feared it'd make me lazy, make me not use my arms and build arm strength. Now we know I can't build up my muscles, so he finally wrote the prescription.


     The first day I get the motorized wheelchair home I chase Alec around our apartment. I'm not a good driver yet and keep crashing, leaving tell-tale gray scratches on the white walls.

(More later.)

Of Dragons and Disabilities

Over the weekend I saw "How To Train Your Dragon," the new DreamWorks cartoon and box office sensation, with my wife and our younger daughter. I'll spare you my rant about wearing 3-D glasses -- and my hope that this latest trend doesn't last.

What I loved about this movie was a completely overlooked, unexpected subplot detail.

Nobody told me there was a disability theme in the story.

One of the main adult characters, the Viking leader's no. 2 guy, is a double-amputee who keeps fighting, one of the bravest and most loyal of all. Not that he's an overcomer super-crip type. He just blends in. In fact, I didn't even notice his replacement limbs until halfway into the movie. Then, the primary cute dragon-cum-pet needs a prosthetic rear wing. Finally--well, I don't want to give away the ending. Let's just say another character acquires a prosthetic aid toward the finale, too, and after a pause it's no big deal. No rousing, uplifting, inspirational hoo-ha, and no tears. It's not glossed over, either, because accommodations must be made (and nobody can make them as well as the injured person himself, which certainly rings true for me). They all work together for the good of the mythical half-Norse, half-Irish (huh?) island kingdom, with full inclusion for those maimed in combat.

Wow! Very cool.

I hope it teaches kids something about the value and acceptability and normality of assistive devices, prosthetics included. You know, in a way the story is dead on. Historically disability and war have always been closely linked. One of the earliest known references to disability-related hardware comes from an ancient Sanskrit text that tells of an Indian warrior named Queen Vishpla, around 3000 BCE. A battle injury led to the amputation of one of her legs. An iron leg was made to replace it, and she returned to fight again. (See the Disability History Timeline)

Motorized wheelchairs might not have been invented if not for the veterans of World War II--improving upon designs putatively sketched by George Westinghouse in the late-19th century and, later, British engineers during the first World War, for injured soldiers and civilians. In the early 1950s a Canadian inventor named George Klein supposedly perfected a model motorized wheelchair for WWII vets, which in 1956 became mass-produced by a California folding-wheelchair manufacturer called Everest & Jennings. Though those early chairs were notoriously slow, E&J dominated the wheelchair market for the next 30 or 40 years. (See A Chronology of the Disability Rights Movements)

So hooray for the understated disabilities theme in the dragon movie! Overall, the story ain't bad either. But next time, if I had it to do over again, I think I'd go for the 2-D version. The tickets are cheaper anyway.

University of Southern California/Rancho Lifestyle Redesign