Tuesday, February 28, 2012


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.


Friday, February 3, 2012

Super Bowl Sunday & My (sort of) PTSD


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.

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