A POST-CONFERENCE POST

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.

Keep your Fountain of Youth!

I have few hobbies.  I don't play tennis, golf, or Xbox.  I watch the occasional NBA game or police procedural.  On weekends, my wife and I like to do the tough crossword puzzles together, a cooperative team effort.  And I read, of course, but for me that's almost as much a professional endeavor as a pleasant pastime.

 

None of these activities are done on anything resembling a regular, devoted basis, as a true hobby would be.

 

Yet I do indulge in a guilty pleasure I just can't seem to stop: I like to watch old movies (and some old TV shows).

 

Hard to say why exactly.  It used to be—in the years after I graduated from college—that I considered myself almost an unofficial student of cinematic history.  I rented every intriguing old movie I could find at specialty video stores.  I went gaga for Fritz Lang and Ernst Lubitsch, "discovered" forgotten stars such as Warren William or Pola Negri.  I took in everything from the obscure European silent to the popular romantic comedies of the so-called Golden Age.  I was determined to memorize each one so I'd never accidentally watch the same film twice.

 

You like the Tracy-Hepburn matchups?  Ah, but have you ever seen "Keeper of the Flame"?  You think "It's A Wonderful Life" is a great holiday flick?  Have you ever seen "The Shop Around The Corner"?

 

Aside from the escapist pleasures of the moving-images themselves, I was equally fascinated by the cultural and historical implications.  Were women portrayed more fairly in the early years of Hollywood (Marion Davies, Constance Bennett, etc.) than in, say, the reactionary 1950s?  Why was Sidney Poitier so important to the Civil Rights Movement?

 

And perhaps most relevant to me, why were there so many villains with disfigurements and/or outright disabilities?  (Can you hear me, Lon Chaney?)

 

Last week, for no particular reason, I started to re-watch "Monkey Business."  Not the Marx Brothers vehicle from the 1930s but the 1952 film of the same name, perhaps best known nowadays as an early vehicle from Marilyn Monroe.  (Make your own "chassis" joke.)  She's quite funny as the archetypal Dumb Blonde Secretary, but that's not why I started watching it.  Honestly.  I was randomly searching for Cary Grant titles.

 

Anyway, Grant is the real star of the movie, along with Ginger Rogers.  In many ways it's a sort of remake of his "Bringing Up Baby"--he's an absent-minded scientist who has hijinks involving obstreperous animals.  To my surprise, I was hooked and had to watch it all the way through.

 

Now, maybe it's a sign of encroaching Alzheimer's, but I really didn't remember any of the details of this movie though I'm sure I must've seen it before.  (Mustn't I?)  If anything, I vaguely recall once upon a time thinking it was too silly to bear.

 

Yes, it IS silly.  It's slapstick comedy.  But here's the thing: I think it has a terrific message for people with disabilities.  Especially people aging with disabilities.

 

Not to give too much away, but there's an accidental discovery of an anti-aging formula, a lab-created Fountain of Youth.  Which creates situations aplenty for the actors to behave like, well, wild intoxicated idiots.

 

In the end, of course, they realize that shedding the strictures of age ain't so great.  Simple message—youth and its concomitant healthiness aren't all they're cracked up to be.  He'd rather need eyeglasses and suffer through his bursitis or whatever—and she'd rather be stodgily middle-aged (at all of 41!)—than be the outrageous, insecure, jealous, wasteful and antisocial hellions they were as healthy, energetic kids.

 

It's sweet.  To me, however, there's a profound disability message in this.  Sure, depending on assistive devices such as wheelchairs can be a big inconvenience.  But you can live happily with such limitations and dependencies.  To an extent, you're only as old or as decrepit as you feel yourself to be.

 

I guess you can find profound messages or, for that matter, offensive stereotypes in all kinds of places.  All I know is, this stupid old movie kept me grinning for days!

 

http://www.amazon.com/Monkey-Business/dp/B001MTBW5K/ref=tmm_aiv_title_0?ie=UTF8&qid=1367798776&sr=8-2

THE INSANITY OFFENSE

Scapegoating the Mentally Ill
(A work-in-progress, on the slow course of progress...)

The current national discussion about gun control, though plainly necessary and important, takes a dangerous turn when it sets sights on people with mental illness.

I don't have a mental illness and can't claim to understand the many varieties and ramifications of that diagnosis.  But I have a physical disability, which can be just as stigmatizing. 

 

I was born with spinal muscular atrophy, a genetic neuromuscular weakness.  I'm a lifelong wheelchair-user with pretty much no use of my concentration-camp-thin arms and hands. 

 

Sometimes when people see me they become a little afraid.  I don't want people to fear me, and I don't think we should fear people with mental illness either.

To be sure, the need to cut gun violence is paramount.  And I'm not against background checks to screen gun buyers for a criminal record.  Recidivism among violent offenders is alarmingly high.  That's a very different kind of precaution, though, from targeting those who rely on meds to keep their thoughts and emotions aligned.

I concede that mental illness enters the debate only in the context of preventing sufferers from falling through the cracks, to help them as much as to avert a future disaster.  This is not a modern-day witch hunt.  Yet I can't help feeling that the notion of using mental illness as a guide to identifying those who might be likely to commit violence one day just smacks of the disability equivalent of racial profiling. 

As someone who was not expected to live to adulthood because of a physical condition, but is now a 50-year-old husband, father, Harvard graduate, author and professional journalist, I don't put much stock in using a diagnosis to predict what people are and are not capable of. 

The fact is, the majority of people who are diagnosed with a mental illness are nonviolent.  Murderers, no doubt, are not in their right minds.  Yet many fatal shootings are never connected with a pattern of mental illness.  Gang killings, to name one prevalent variety, may be motivated as much by drug use or peer pressure as anything else.  Not to mention jihadists, who kill with religious fervor but rarely go for psychological evaluations.

To me, the assumption that the mentally ill have especially itchy fingers stems from age-old stereotypes.  Back in the 14th century Geoffrey Chaucer wrote that "cripples" were "crafty," in the sense of sneaky.  Where would nightmare tales be without disfigured, limping, one-armed, hunchbacked, peg-legged, hook-handed, and eye-patched fiends?  These are the forebears of the modern "psycho killer"—a dysfunctional, deformed mind and body signifying a defective soul.  

Science has been in on it, too.  Through the 1970s serious academic studies attempted to link particular physical traits with criminal behavior.  At some universities, college students were routinely photographed in various states of undress to document their proportions—the ratio between their heights and their head sizes, and other minutia—in an attempt to forecast their fates.

Don't get me wrong.  We must do all we can to curb gun violence.  But in our rush to solve a virulent problem, let's not resort to what is really nothing more than a form of scapegoating.  We might as well single out people from a particular neighborhood or socioeconomic subgroup that has a high murder rate—yet that would be unthinkable, wouldn't it?  Focusing on those with mental illness should be just as abhorrent.

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http://www.youtube.com/watch?v=vdp42fYKFZ8

AM A SPECIAL-NEEDS DISABLED CRIPPLE?

Recently, a friend wrote me about an idea he was puzzling over.  It concerned the language of disability.

The very word itself, he said, was troubling--and I agreed.  He wished there were a term that "didn't even remotely imply 'substandard' or 'not,'" he wrote.  He wished there were "a different gestalt altogether."

(Gestalt!  Now THERE'S a word!)

He's certainly not the first person to raise these sorts of concerns.   What's so great about the word "disability"?  What was so wrong with the word "handicapped"?  Is the word "cripple" still considered offensive? 

 

In further explanation, he fleshed out this scenario:

Wouldn't it be nice if people thought

'There goes Ben, just like me'
and not
'There goes Ben, I'm glad I'm not him'

Well, I couldn't disagree with that!

In answering him, however, I felt like he'd released a pent-up wellspring of ideas and yearnings.  Every movement--perhaps every generation--has gone through the undulations of nomenclature.  (Okay, maybe that's a bad phrase.)

For example, how did we go from "Black is beautiful" to "Black" is not good, or at least not as good as "African American"?  How did "gay" suddenly become LGBT (and now I'm told it's LGBTQA)?

All right, these are rhetorical questions.  I'm not so much interested in the answers as the ideas behind those transitions.  Are any words or terms intrinsically good or bad, positive or pejorative, or is it just a matter of context?

I told my friend that his idea was a good one for an essay, but that he might want to flesh it out a bit.  Perhaps provide some linguistic history--for instance, I believe the oldest English word for someone like me IS "cripple."  Chaucer used it, I think.  It referred to someone who creeps along the floor (no doubt related to the word "creepy"). 

Many folks I know object to the word "disability" because it does sound so negative, yet at least it has the advantage of being a term chosen by disability-rights activists, as opposed to imposed upon us in patronizing fashion by others.  I don't love it, but I think it beats the treacly euphemisms such as "differently abled," "physically challenged," or "special needs."

On the other hand, I told my friend, we all have bigger problems to worry about than language, don't we?  I think of this when I hear people use politically correct terms like "gay" or "African-American" to say something disparaging and most definitely not politically correct!  Do words really change attitudes?  Not sure.

What do you all think?

TWO SCORE AND TEN

In a week from now I'll have lived a half-century.  Turning 50 is something people do all the time, and never without some trepidation or at least reflection.  What surprises me, though, is just how calm I feel about it.  Guess I've been anticipating the moment for the past year if not more, so it's actually a bit anticlimactic.

Or is it?  Am I just saying that to calm myself down?

In the greater scheme of things, what makes my 50th birthday momentous must be the fact that I wasn't always expected to live to my teens.  In the dark ages when I was born, doctors didn't know what to make of my sluggish infantile development.  I failed to sit.  I was a floppy baby.  Many diagnoses were pinned on me by way of explanation.  Perhaps chief among the accomplishments I would never attain: adulthood.

In memory, my parents never believed that stuff.  They held to what must have been a romantic ideal--that I would grow up and, moreover, could become anything I wanted.  And fortunately, I didn't want to become anything I couldn't.  I knew I wasn't going to be an athlete, for instance, and when MDA--in that early-1970s telethon ad I've done my best to make famous (or infamous, really)--declared that I wanted to be a fireman "if" I grew up, I balked at the absurdity of it!  I wanted to be a scientist, a detective, maybe a starship captain.  I had bigger fantasies!  And yes, I saw myself as more brain than braun.

Which is not to say that I didn't have fantasies of physicality, too.  In fact, I frequently imagined chasing after bad guys--running and jumping and fighting like my heroes on TV.  It was just that I saw these uncharacteristic activities as add-ons, a vague sense of unrealized potential, but not as regular or likely scenarios in my future.

After all, though Capt. Kirk was more than capable of kicking ass, that wasn't why he was captain, really, was it?  He was captain because he knew how to be in charge, knew how to think outside the box.  He was smart and daring.  Had leadership qualities … which my teachers said I possessed as well.

And so I went on expecting whatever my version of a normal life was.  I boldly went to Harvard.  I boldly fell in love and my girlfriend and moved across country.  I boldly looked for work and, failing, boldly tried to publish novels.  Got married to that girlfriend, too.

I gave up the dream of ever being dubbed a wunderkind when I turned 30.  Three years later I became a father, a miracle that was repeated three years after that.  By and by I found occasional work as a writer.  In time, technology caught up with me.  Thanks to the Internet and voice-recognition computers, I was able to write more, more quickly than ever before, and do independent online research, submitting my writing without needing others to deliver it.

Disability rights kept up with me, too.  It gave me a community, a sense of history, and a new subject to write about.

Still, there have been many times over the past 50 years when I doubted I would make it to this landmark.  Bad asthma and bronchitis have periodically undermined my optimism.  Occasional hospitalizations--especially the series of unfortunate events that took up most of late-2007 and 2008--brought me closer to that "undiscovered country" than I'd like to be ever again.  Yet somehow I'm still here, despite occasionally wondering how much longer.

Are there still things to do?  Of course!

Besides the personal goals of seeing my children grow up and so forth, I held in my heart for many years the dream of publishing a book.  A real book, distributed by a real publisher.  Three months ago, that dream became a reality.

I'm still not quite believing it's true, still in the midst of trying to promote that book, still incredibly emotionally fragile over its rises and falls in the Amazon rankings and elsewhere.  If I get a good review, even in some obscure Web site, I feel complete as a person.  If there's a lull and the book seems likely to die of neglect, I die a little inside, too.  I'm like the high school nerd waiting breathlessly for a smile from the popular blonde cheerleader.

So here I am, nearly 50, maturing but with definite strains of immaturity.  And for those of you keeping track, yes, my birthday this year falls on Thanksgiving--as it did when I was born.  It happens that way every few years.

This time, however, I meet my birthday with many of my life's dreams achieved and nothing to look back on with regret.  My only real fear now is, what will be my next set of dreams, goals, disappointments, and accomplishments?  Because turning 50 shouldn't be just an endpoint; it should also mark a new beginning.  Yes? You think? 

I'm game!

THE PRESIDENTIAL DEBATES…

... got off to a rousing start last night (yawn!). But one key issue--one attribute--was conspicuously absent: Ann Romney's multiple sclerosis.

In the past, she and hubby Mitt have made a big deal about this.  And lest you think I'm exaggerating the importance of multiple sclerosis in this election, at the Democratic National Convention in August, Michelle Obama made a big point about her father's multiple sclerosis, too!

For a while there it seemed everybody wanted to get on the MS bandwagon. But why? If experience with multiple sclerosis makes one better suited to be president, then I should run for emperor!

Disabling conditions like MS can be profoundly educative, to be sure.  But they hardly make you special, or even presidential material.

I was born with spinal muscular atrophy, a congenital and progressive neuromuscular weakness.  I've never walked or stood, never had much use of my hands--though I was able to feed myself till about 20 years ago.  Now my hand strength is completely gone.

Not that I'm seeking pity.  Nor do I want to engage in a game of "who suffered more"—the Romneys, the Obamas, or myself.  What I am saying, however, is that I know the disability experience, and I know it's not in and of itself grounds for leadership.

Yes, it can make you humble.  It can also make you angry.  It can make you give up, or it can lead you to find an inner strength you never knew you had.  Or it can do none of the above.  There's really no predicting.

No matter how we react to our own disabilities, people call us courageous and inspiring.  They mean well, but there's nothing ennobling about having a disability.  None of us asked for it or had any special qualifications.  It simply happened, and it can happen to anyone.

You never know how well or poorly you will cope when disability enters your life.  But somehow you will cope.  We all do.  We don't honestly have any choice about it.

So are the Romneys or Obamas better people for their encounters with a crippling condition?  Possibly.  But one thing is clear: they didn't survive it because of their grace or strength of character or gumption.  They survived simply because they endured.  In short, they got lucky.

I concede that having personal knowledge of a disability does lend a candidate some common ground with the estimated 50 million Americans who are living with a disability.  That's as far as it goes, though.  It's just not that unusual a thing.

In my experience, the challenges associated with disability come in three varieties: First, and arguably foremost, are the physical/medical struggles.  We do have to fight with our bodies' limitations. 

Second are the societal barriers--the attitudes and obstacles that can isolate people with disabilities from the mainstream.

Finally and perhaps most importantly, there are economic issues.  Disabilities are expensive.  Even leaving out medical bills, a motorized wheelchair can easily cost as much as a new car.  A modified van starts at $50,000.  And if you need full-time personal-attendant care, you'd better have a spare hundred-grand on hand.

The extent to which a disabling condition impacts one's life is directly related to one's financial resources.  If you do have sufficient funds to procure the medical attention and assistive technology you need, your disability can practically be reduced to a mere inconvenience.  So I'm not really sure the Romneys experienced disability the way poorer people do. 

In fact, the most recent census reported that a third of working-age adults with disabilities are unemployed, far higher than any other minority group, and 27 percent live below the poverty line--double the proportion of adults without disabilities.

Granted, neither the Romneys nor the Obamas invented this idea of disability as a kind of badge of courage.  It harks back at least to Franklin Roosevelt.  Whenever the polio-surviving president couldn't hide his inability to walk, he cleverly manipulated his image to turn a presumed liability into an asset.  His disability became a stand-in for the Great Depression itself, and his ability to rise above it--albeit on crutches--a symbol of his mettle and the nation's potential to overcome.

To this day, people with disabilities are called "overcomers" a lot.  I don't know how many times I've been praised for "overcoming" my disability.  It's simply not true.  I haven't overcome it, Mrs. Obama's father didn't overcome his, and even Mrs. Romney--whose MS seems to be in remission--hasn't overcome hers either.  Be inspired if you like, but none of us deserves credit for beating our conditions.  We can't.  Rather, we learn to live with them.

If a candidate truly wants to embrace the disability experience, he or she must understand that we don't want sympathy or blanket admiration.  We want respect, opportunities, a place at the table.  Not because of paternalism or pity, but because of an honest, realistic, un-sentimental understanding of what living with a disability is really like.  And maybe it's not so different from what life is like for everybody else.

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A BERKELEY STATE OF MIND

By Ben Mattlin

It's widely reported that a certain famous novelist has a new book out that takes place on and around Telegraph Avenue--that multicultural boulevard running through Berkeley and Oakland, California. A worthy landscape, to be sure, but I can't help wondering if his fiction will do justice to that area's seminal role in the disability-rights movement.

Granted, it may seem a small part of that vibrant cityscape's history.  Small to you, that is.  As a lifelong wheelchair-user, I can't help regarding Berkeley and environs as a kind of Holy Land.

I myself didn't understand their importance until researching my own book--a memoir about growing up during the height of disability rights.  I found myself referencing Berkeley over and over again.

In fairness, I haven't been privy to the celebrated author's new novel yet, but I'm reasonably certain there's little or no overlap in our takes on Berkeley.  Does he mention the Rolling Quads, for instance?  Doubtful.  But once you learn of them, how can you forget this Merry Prankster-ish troop of early activists who tooled around the Bay Area protesting access barriers in the late 1960s in revolutionary devices known as motorized wheelchairs?

Does he reference the world's first curb ramp for wheelchair-users, cut at the corner of Telegraph Avenue and Bancroft Way?  Or that it was at the renowned University of California, Berkeley, campus that Ed Roberts, a polio survivor, fought for (and won) the right to attend regular classes in his wheelchair, decades before any disability-rights laws had even been considered?

Roberts is now known as the father of the independent-living movement, which went beyond the political idea of equal rights to actually mapping out how people who were so totally dependent on others physically could be empowered to control their own lives.  His legacy (he died in 1995) is a national network of independent-living centers designed to support people with disabilities in that quest.

 
No reason the famous novelist should listen to me.  His story and mine are completely dissimilar, I'm sure.  And I have no personal stake in Berkeley--I don't live there--other than the debt of gratitude I feel.  Yet I remember my father's taking me to the original ILC there, in 1979.  I was on the cusp of starting college on the East Coast, of living on my own (with a paid attendant) for the first time.  Dad thought the place might inspire us, teach us something.  What I recall mostly is my adolescent discomfort at all that talk about rights and empowerment--but I loved the gadgets.  The speakerphones, remote switches for lights, and souped-up, customized wheelchairs that have become emblematic of modern disability life.

I'm confident I'm not the only one who feels this visceral connection.  Many disabled people's lives have been profoundly affected by Berkeley's revolutionary zeal.  Leaving this particular material out of any yarn about Berkeley would seem a major disservice.  Even today, Berkeley is the home of the World Institute on Disability, a leading think tank on nonmedical, non-technological, disability-related issues.  Policy leaders from around the globe convene on its campus to discuss the very survival of what, in some countries, is the most marginalized population.

 
Chances are the celebrity novelist already knows some of this, though he might not feel it in his bones the way people like me do.  You can't spend time in Berkeley and not be aware of its sizable disability presence.  And in truth, the city itself takes up only a small piece of my book.  (The word "Berkeley" appears only a dozen times out of some 75,000 words.  I counted.)  But I like to think its spirit pervades my true tale of the struggle to achieve a sense of autonomy and pride in a sometimes unaccommodating, even hostile, world.  Isn't that what Berkeley-ism is all about?
 
Perhaps the eminent novelist and I could tag-team.  Not that we should literally tour together, but could we defer to each other on specific areas of expertise?  I'll take the accessibility stuff, and he can have the rest.  Yes, trying to piggyback my book promotion off of his (and vice versa) may sound crazy.  But these days, when you're not supposed to judge a book by its cover but are expected to judge it by dubiously-sourced online reviews, who knows?  Maybe I'm onto something.  Maybe this'll prove a winner after all.
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Quick links: The books mentioned here are –

Telegraph Avenue: A Novel, by Michael Chabon

Miracle Boy Grows Up: How The Disability Rights RevolutionSaved My Sanity, by Ben Mattlin