NO APRIL FOOL

For me, April has a special significance I never fully realized until recently.

            In April 1977, when I was 14, I was in a hospital bed in New York, preparing for surgery to correct my severely curved spine.  The scoliosis came from a neuromuscular condition I was born with, a form of spinal muscular atrophy, which made me unable to walk or sit straight. 

            Without adequate muscles, my backbone was collapsing upon itself.  I looked more like a curly headed beach ball than an adolescent boy.

            I didn't know it then, but at the same time as I was lying helplessly in the hospital, disability-rights activists across the country were agitating to rescue me in other ways that would become apparent only years later.  Four years before, the federal government had passed the world's first disability-rights legislation--the Rehabilitation Act of 1973—but it wasn't being enforced.

            When I met some of the survivors of those protests, in researching my book about the movement, I learned that the biggest demonstration occurred in San Francisco (not surprisingly).  Those patriots actually camped out for 25 straight days and nights at the Health, Education and Welfare Department's local headquarters--sleeping in their wheelchairs or on the floor, sharing urinals, catheters, and personal-care attendants, bathing in front of one another with little shame.  Many had come from institutions where they were used to having no privacy anyway.

            I recall feeling a little like that myself, that I had no privacy, spreadeagled in the pediatric orthopedic ward.

            Anyway, these protesters had nothing much to lose and, frankly, nothing else to do.  Most were unemployed or had been banned from mainstream schools.

            I went to a regular school.  My parents had insisted on it, fought for it, in those bad old days before kids with disabilities were fully integrated. 

            Yet I had a lot in common with those protesters.  Like them, I was benefiting from the latest medical treatments, such as my scoliosis surgery, and technological advances like motorized wheelchairs.

            In the end, I came out straighter and taller than ever.  My breathing improved and the strain on my heart eased measurably.  And the activists proved victorious, too!  They got President Carter to sign new regs to enforce equal access.  The deadline was 1980, the very year I started college.  I became a sort of pioneer, a test case, at Harvard University.  So I was a direct and almost immediate beneficiary of the April protests.

            I never knew about these foot soldiers--or should I say wheel, crutch and guide-dog soldiers?--of disability rights until after I'd graduated and begun to ponder my role in society, my roots, as it were.

            What I take away from this saga of unsung heroes is a combination of gratitude and inspiration.  Even the smallest, most overlooked acts of righteous bravery can have profound repercussions.  After all, the regulations they spearheaded became the model for subsequent, more sweeping civil rights for disabled people.  And where would I be today without that?

            So for me April is a time for thanks and remembrance.  For a certain humility mixed with the hope of ever-possible rebirth.

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GOODBYE FEBRUARY

For me, a White guy with a severe and highly visible physical disability, the history of African-Americans, which we celebrate in February, has a special resonance.

It may sound presumptuous, but I believe our minority experiences overlap in certain profound ways.

I was born with spinal muscular atrophy, a genetic degenerative neuromuscular weakness.  My spine is curved, my limbs are reed thin, I have the basic musculature of a ragdoll, and I can only control my motorized wheelchair with my lips.

When people see me tooling down the street or meet me for the first time, they often have an unnatural reaction.  Sometimes they even cut me a wide berth as if to avoid close contact—something I know many African-Americans have experienced. 

I thought about this when I heard a quote by Thurgood Marshall.  He once said that no matter where he went, whatever city he stopped in, he never had to look at his hand to remember he was Black.  He could tell by the way White people reacted to him.

My affinity for African-Americans was developed early on.  As a high school kid in the 1970s, I recall trying to catch a cab in New York with Kenny, my attendant and best friend, a young man from Trinidad.  Taxi after taxi would slow down and then speed away once the driver got a look at us.

In the years since, I've noticed things like if I'm out with a White person, White store clerks and waiters and such often ask him or her what I want.  Yet if my companion is Black, it's the other way around.  They turn to me for input, ignoring my friend as if he or she is an underling.

Perhaps more importantly, I know what it is to feel separate, even excluded.  Many aspects of our society are closed to me as surely as they were to African-Americans during segregation.  They may not be closed due to malice.  But if, for example, a school PTA function is held at someone's walk-up apartment or McMansion with steps out front, I can't attend.  And needless to say, discussing business over a round of golf or handball is out of the question, too, even if the country club or gym isn't technically restricted.

Not that I'm feeling sorry for myself.  But I do think I understand what many African-Americans have gone through in a way that other Whites may not.  And I believe this sense of solidarity is mutual.  African-Americans frequently nod at me or exchange a kind word when we pass on the street or in office corridors in a way that, I'm told, doesn't happen with other Whites.

Maybe this connection stems from my having spent so much time among Black people.  I've always needed help doing basic tasks—from getting washed and dressed to running errands and doing household or office chores.  Over the years, many of my assistants have been Black.  Lest I sound like Katheryn Stockett, author of "The Help," I believe the experience of needing a hand is also in keeping with the African-American experience.  Another Thurgood Marshall quotation: "None of us got where we are solely by pulling ourselves up by our bootstraps. We got here because somebody … bent down and helped us pick up our boots."

We all can benefit from recognizing past struggles and saluting the heroes.  But there's often a universality to each group's experiences.  Perhaps reflecting on commonalities as much as differences will help us rededicate ourselves to building bridges AND  ramps.

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Super Bowl Sunday & My (sort of) PTSD

ROOTING FOR THE SUPER BOWL,
NO MATTER WHO WINS

By Ben Mattlin

With the New York Giants and New England Patriots once again facing off in the Super Bowl—as they did four years ago—why do I find myself shuddering in posttraumatic stress?

I'm not exactly what you'd call a football fan.  What's causing me to experience horrific flashbacks has nothing to do with the game itself.  It has everything to do with where I was four years ago.

Four years ago I nearly died.  Four years ago I was lying in the ICU at UCLA only semi-conscious after a botched colon surgery had left me with blood poisoning and sundry other dangerous complications including repeated pneumonias and multiple blood clots. 

I remember trying to watch the Big Game from my hospital bed.  The TV was at a weird angle, or my bed was, and it was difficult to hear over all the beeping machines.  In the hospital the TV is always on, it seems, but I couldn't follow what was going on.

I hadn't thought about any of this—at least not so vividly—until the Republican primaries started up.  That sparked the memory cylinders' chugging.  I missed most of that horse race four years ago, too.

I'm no stranger to medical complications.  I was born with spinal muscular atrophy, a genetic neurological delight that relentlessly weakens muscles.  I've never stood or walked, always used a wheelchair and been susceptible to colds, especially respiratory infections.  So for me, having a fairly standard surgery go wrong and completely upend my life and my family's life for the better part of a year seemed pretty much par for the course.

And yet it was anything but.

I'm all better now—from the hospitalization, that is, not the spinal muscular atrophy.  Though I still bear the physical scars of that ordeal in the ICU, my life is back to normal.  But then the Giants and Patriots started winning playoff games, looking like Super Bowl contenders, and I began to re-glimpse those bleary days. 

Last Sunday, when the mud at Candlestick Park settled and the Super Bowl rematch was official, it all came flooding back in dizzyingly sharp focus.  The way my coma fog had initially lifted to reveal my family gathered around—even my then-80-year-old father, whom my wife had called back from a vacation in Mexico … my struggle to communicate when intubation muted me ... the x-ray tech who awakened me each morning with a jolt, followed by a kind nurse who kept asking, "Mr. Mattlin, do you know what day it is?  Do you know where you are right now?"

And, of course, the impatience to return home, a wish that wouldn't be granted for nearly three months.

Ever since my hospitalization, I've taken special delight in not missing the Super Bowl, the Oscars, and other markers of the post-holidays season.  I'd always enjoyed them before, but they'd never felt so significant as they have the past three years—celebrating them as reminders of being well, of no longer being incarcerated among a webwork of life-sustaining tubes, of survival itself. 

With each passing year the flashbacks have been fading.  Which is why this year's HD-like clarity is so shocking. 

Of course, I missed other events, too, when I was too busy fighting for my life and stoned on medication.  The birthdays of my school-age daughters and my wife being chief among them.

I suppose this is how returning servicemen and women must feel.  Perhaps Congresswoman Gabrielle Giffords, too.  For anybody whose life has been interrupted by forces beyond their control, just to get back to the normal things—to experience ordinary, predictable occurrences—feels profound and wondrous.  The fact that this time nothing has gone wrong, no major disaster has interfered with the continuum we tend to think of as our due, becomes nothing short of miraculous. 

That's not necessarily a bad revelation.  What is bad—the stress, the trauma, the physical and emotional pain—will all heal in time.  But the recognition of making it through, of remembering to take joy in the simple things, perhaps should never be completely swept aside.

Is this the silver lining—learning to appreciate what you almost lost?  I'm far too cynical to accept such a notion.  But since bad things do inevitably happen to all of us, why not take away from them something of lasting value?

So this year I hope to watch the Super Bowl as never before.  That is, if I can stand it.  If it doesn't bring back too many ghastly half-memories.  Even if that happens, it's simply the fact that I can watch the game—any game—that counts for me.

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MIRACLE BOY GROWS UP available here!

 For more info about the book:  http://www.miracleboygrowsup.com/

Post-Manuscript Journal, Part 3

About two weeks ago I learned my book is already available for pre-order on Amazon.  Woo-hoo!

I asked all my friends and relatives to order.  The idea, at this point, is to keep the numbers up.  Don't know how exactly Amazon calculates that stuff, but it's supposed to be important.

I've checked back on Amazon occasionally.  Last week I noticed my bio had been added.  Not the version I wrote exactly, either.  But not bad.

Today I notice the publisher has actually posted a description of the book.  Wasn't there before.  Surprising to me, since Skyhorse has only seen the opening chunk (same as anybody else who's followed this blog).

The book description is a tad cheesy, but I like it.  Hope my book lives up to it!

I haven't yet consulted with Skyhorse's publicist at all.  But it's heartwarming to know that somebody's been secretly working behind the scenes of my behalf!

More news as it develops…

http://amzn.to/th0krx

Post-Manuscript Journal Part 2

Today I got my first unsolicited pitch from a book publicist.

            Didn't know publicists did that sort of thing, but I confess to being flattered and impressed.  The outfit--Newman Communications, in Boston--knew the name of my book, knew the approximate publication schedule, and actually went to the trouble (well, Google) of finding my Web site in order to find me.

            Presumably, this means the publisher has been leaking announcements through the grapevine.

            It so happens I have been interviewing publicists, and while I would never call upon someone who accosted me--say, a telemarketer--this one I am tempted to consider.

*

The occurrence is just the latest surprise I've experienced since completing my manuscript.

            Over Thanksgiving, I saw my family for the first time since it's been done and since they've had a chance to read it.  Everybody likes it, and is supportive, but I find that afterward I'm feeling a bit shaken.  As if I stood in front of the class with my zipper open!

            Is this what's in store for me, as others read my innermost secrets, thoughts, fears and dreams?

            Well, if I didn't want people to know my perspective on life, I shouldn't have written about it for publication.  Right?  What did I expect?

            Yet I think because it was family the reaction was particularly charged.  I myself was nervous in a way I haven't been in decades (am I regressing? I pondered), and their comments-- "curious you left out such-and-such event," "I've been avoiding bringing this up, but since you mention it in your book, well, I've always wanted to say…"--felt unusually bare and frank and bold.  Or maybe I was just reading extra dollops of Significance in them.

            Not to worry.  Soon the thing will be sent off to the publisher, and then I'll begin the publicity push in earnest.  Onward and upward!
            But first, maybe I ought to call back this Newman fella…

Schlubs like me?

Last summer, two days after I announced my humble book deal, someone asked me for the name of my agent.  That's how I knew something bigger had changed, at least temporarily.  I had arrived.

            But arrived where?  It's my first book, and I'm excited--but the publishing contract certainly isn't lucrative (I've been paid more for some of my smallest articles).  And there's no indication this venture will prove successful. 

            So why should anybody think I'm a useful contact?

            I mean, I got the concept.  I'd done it myself, scrounged for referrals to agents.  But when I did that, I'd hit up, you know, big popular best-selling authors.  Not schlubs like me.

            Looking back, though, I remember the desperation and isolation I'd felt when getting an agent was the goal.  It was like screaming and wondering if anybody would ever hear you.  After a few years someone signed on to represent my project.  Hooray!  Yet still there was work to be done.

            Under her tutelage, I had to put together a proper book proposal--including writing a sort of marketing plan and a detailed, chapter-by-chapter outline.  For me, the outline was the hardest part.  I've never used outlines.  My agent called it a Table of Contents, but that didn't help much.

            Once the book proposal was done, of course, the goal became finding a publisher.  No, it's not an automatic next-step when you have an agent.  At least not a hard-working agent like mine; no doubt there are some highfalutin agents who are so well known and well respected they can practically snap their fingers and publishers line up, guaranteed.  Maybe.  If you can get one of those agents, you must be pretty highfalutin yourself—in which case you hardly need an agent except to negotiate terms.

            That's a very different job from hustling your baby--er, your book proposal or manuscript--around to publishers, trying to generate interest much less a contract.

            Anyway, there I was with an agent  …  and eventually a proper book proposal.  It took another few years to find a publisher.  And in all humble honesty, I can't say my agent exactly found me a publisher.  She tried, to be sure.  But I had to work a few connections myself to make the thing a reality.

            Funny, but the publishing deal I'd mentioned--which brought someone to ask for a referral to my agent--fell through.  Fortunately, I hustled a bit, called in some favors I didn't know I had coming to me, and quickly lined up an alternative deal.  (It came so quickly, in fact, that I never bothered to announce the change.)

            Fast forward three or four months to today: the manuscript is finished.  It went faster even than my most optimistic projections.  That's either because it's a story I was burning to tell or because I did a slapdash job.  The verdict is still out.

            It's not due in to the publisher for another month, so I still have time to revise.

            Writing it was, at times, more painful than I'd supposed.  Conjuring up past pain, stupidity and peril makes your heart quicken and sour.  I hope that means I got in touch with some true feelings.  (Otherwise, it was a helluva sucky ride for nothing!)

            I decided that because the book is not meant to be an exposé, and I'm not trying to settle old scores or have the last word about anything, I'd show the manuscript to my family--or at least those members who have large supporting roles in my story.  This was partly an exercise in fact checking.  Also, I wanted to protect them from any nasty surprises.

            Overall, the family reviews are good.  Not exactly unbiased, but mine tends to be a judgment clan.  Predictably there are a few nits to pick.  There are things that seem important to one person and are all but forgotten by another.  I find myself arguing--at least in my head--that this is MY story.  If you want it different, write your own!  Nasty stuff like that.  I get defensive.  I know I shouldn't.  If someone were writing about me, I don't think I'd exactly love the attention either … unless it was all praise, which it wouldn't be.

            So here I am, book complete, a month before deadline.  Will I truly read it over again and consider revisions?  In all honesty, I don't want to.  I'm still digging myself out of the dingy well of memory and in no hurry to return.

            If I left out something important, I'll just use it in my next book!

JERRY LEWIS' LEGACY

For the first time in nearly half a century, the Labor Day telethon for the Muscular Dystrophy Association won't feature Jerry Lewis this year. 

Since his abrupt resignation/dismissal in early August, speculation has abounded.  What happened?  Who's to blame?  What's next for him and for the charity? 

As an ex-MDA poster child and one time anti-telethon demonstrator, I have my own perspective on all this--and a few suggestions.

The following--or a version of it--was going to be aired on NPR on Labor Day. But at the last minute it got cut ... too late to resubmit to newspapers. So here it is…

JERRY LEWIS' LEGACY

By Ben Mattlin

I remember my mother telling me back in the 60s that Jerry Lewis would stay on the air for 24 hours straight just to help people like me. I was born with spinal muscular atrophy, one of the many diseases that his charity, the Muscular Dystrophy Association, aims to cure.

As a kid, I was an MDA poster child, though I never met Jerry. I quit after a magazine ad had me stand in leg braces under the caption, "If I grow up I want to be a fireman." It was a lie. My life expectancy was normal, even by the medical knowledge of the time, 1969-70. I hated standing in leg braces, much preferred the comfort of my wheelchair. I didn't even want to be a fireman. I tried to cross my fingers in the picture where you can't see. Afterward, I told my parents I wanted out. I really didn't like people feeling sorry for me.

Decades later, I discovered many other people with disabilities felt the same way about the organization's fund-raising tactics. I joined with them in protest.

The primary reason so many of us demonstrated against the telethon in years past was the way it exploited pity to raise money. The ends didn't justify the means, we argued. We were fighting for respect, for equality, for jobs, and access to all society affords. Getting people to cry and hand over their spare change just wasn't in our program.

In the years since our demonstrations, the MDA has made many of the changes we advocated. It's put more people with actual disabilities in positions of authority, albeit mostly as volunteers. It's changed its language somewhat, and become more involved in political advocacy.

But mostly the MDA provides neurologists for the uninsured. It's a kind of secondary insurer. It also subsidizes physical therapy and some necessary equipment. It has run accessible summer camps and, of course, funds medical research.

Yet one of the key problems was never resolved: Jerry Lewis himself. I think the kindest way to explain what was so bothersome is that he was an anachronism, in the way that certain terms we now think of as offensive slurs used to be acceptable. Sure, a man his age can be forgiven for being  hopelessly behind the times. But Lewis steadfastly refused to  recognize the disability-rights movement,  even maligned those of us who demanded respect, calling us "leeches" who were simply "bitter at the bad hand they've been dealt."  He once threatened, "I'll have you killed. You understand? I'll have you killed."  (If you don't believe this, see Vanity Fair magazine from September 1993, Leslie Bennetts' "Jerry v. the Kids.")

It may seem unkind now to point out his faults. He undeniably brought people with disabilities into America's living rooms at a time when many of us were shut away in institutions. Unfortunately, the image of disability he portrayed was relentlessly sad, demeaning, powerless.

Lewis' departure gives the MDA an unprecedented chance to embrace modern disability culture. Though the organization said no one will replace Lewis as its chairman, someone has to be the new spokeserson. Perhaps it can be someone who is more in sync with disability pride.

Maybe even someone who uses a wheelchair.

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Check out this YouTube clip : Jerry sings "You'll never walk alone" to poster that says "Help Me … Please!"