ON FATHER'S DAY, BREEDING MUTUAL RESPECT

By Ben Mattlin

Now that my father is nearly 85 years old, we seem to have a lot more in common than we ever did before.

That's not just because I'm now a father myself.  It's because Dad, who's still in remarkably good health, has had to slow down, which has caused him to understand at last what my life is like as a physically disabled person.

I am a lifelong wheelchair user, thanks to a genetic neurological muscle weakness.  It hasn't stopped me--I'm also a Harvard graduate, husband, father, and moderately busy financial journalist.  But having a disability can at times force me to go slow.  It often makes me plan logistics ahead of time, quashing any impulse toward spontaneity.  And it's given me a particular perspective on life's multifaceted values.

The overlap in my worldview and my Dad's became clear in a recent conversation.  He was grumbling that he shouldn't have to "think young" or pretend to have more energy than he does--that he's entitled to move slowly, spend long afternoons in a rocking chair, need a seat on a crowded bus or even doze off in the theater.  "Sloth," he joked, "is no longer a sin at my age.  It is a well-earned privilege."

My father has a keen wit, to be sure, but for me these sentiments have important repercussions.  I've often pushed myself too hard, felt afraid to use my disability as an excuse--in short, I've acted like what disability activists call a "super crip," trying to be better than average just to prove I shouldn't be counted out. 

Many other minority groups and women have said they have to work twice as hard to be treated as equals.  It's basically the same thing. 

Remember when George Bush Senior went skydiving in his 70s to prove his virility?  How often do we hear about an awe-inspiring quadriplegic or amputee who climbed a mountain or went hang-gliding, or performed some such Herculean stunt?  Maybe they're just naturally outdoorsy, but surely they also want to demonstrate that they've still got it, are still in the game--that there's no difference between them and everybody else. 

Is it really necessary to put these extra physical challenges up against the so-called physically challenged?  Frankly, I think I'm as good or bad as anyone else just as I am, without having to prove it.

I concede that these brave acts do inspire--but some of us are too busy just doing the heroic business of surviving.  Do we really need to do something superhuman to feel good about ourselves and gain the admiration of others?  Don't we deserve the same degree of respect as anyone else?  Frankly, I often feel that the everyday survivors are the true inspirations anyway.

Later, in another conversation, Dad said, "I hate it when people tell me, 'Oh, you're not old!'"  He laughed at the patent absurdity of it.  "I'm almost 85!"

This funny comment struck a chord with me, too.  It called to mind the many times I've heard things like, "We're all disabled in some way."  Comments that are meant to be kind and accepting, I suppose.  So how come all I want to say back is, "Oh, come on!"?

It's as if the words "old" and "disabled" were unspeakably dirty concepts.  There should be nothing shameful about aging or about having a disability.  We shouldn't have to minimize or sugarcoat them.  In fact, I think we should be proud of them.

I asked my father about this.  He denied meaning anything so profound, but I don't think I'm projecting to say he feels a tad insulted, or at least patronized, by such remarks.  And I wonder if he hasn't actually taught me a great deal over the years about accepting differences after all, even if those differences are simply a matter of age.

###

MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity is available now for pre-order from Amazon.com and BN.com--for more info, go to www.MiracleBoyGrowsUp.com

More on PUSH GIRLS

First of all, I've been guest blogging.  It's supposed to be a good way to promote my upcoming book.

(Most of my guest blogs have appeared on DisabledOnlineLosAngeles.  Check 'em out.)

The most recent one, I talked about the new Sundance Channel reality TV series, "Push Girls."  So far, I guess you could say I have a love-hate relationship with the show.

I love that it exists.  I love that it shows hot, empowered women on wheels.  I love that it uses real para- and quadriplegics, telling their own real-life stories.

But…

Well, in fairness, when it comes to disability issues I'm a bit of a radical.  I think the most disabled among us should be welcomed as equals.  I want to hammer those who construct or sanction obstacles to acceptance, integration and access--those who accept or perpetuate stereotypes.  I want to salute all those who've come before and laid the groundwork for everything from curb ramps to civil-rights legislation.  The things we practically take for granted now.  I want to remember, appreciate, and remain vigilant.

This show does none of that.

I understand they are supposed to be loud and brash and flashy.  That's the nature of TV, especially Reality TV.  But when one of them says something like, "If you can't stand up, you've gotta standout!",  I want to answer back, Why?  Isn't it okay just to be who you are, disabled and all?

Granted, I love the scene where the one goes to be photographed in an attempt to restart her modeling career--and ends up having a muscle spasm.  The photographer sort of freaks out, but the woman herself remains calm and in control as she explains what she needs, why this happens to her, and what to do about it.  This is the reality of her disability, and she is completely competent in controlling her own care, making sure her needs are met.  A powerful scene that's especially significant if you know the history of disability portrayals.

I hope to see more like this.

Unfortunately, the first episode was a tad overmuch for me.  Now, I'm not exactly a Reality TV fan.  I'm not into the voyeuristic aspects.  But to me, too often these women seem to protest too much (to borrow from Shakespeare).  It's sad.

For instance, when one of them says that people wonder if she can still have sex, she doesn't just say yes, I can and do.  She actually ladles it on with "oh yes--lots and LOTS of sex!"

Puh-lease!

In future episodes, I'm looking for more about obstacles and barriers and advocacy.  It's a dangerous thing when the burden of integration is put on the oppressed minority--in other words, to say these chicks will fit in just fine if they're plucky, sassy , and brash enough to make it.  I'm delighted they're independent-minded and hate to be helped, as they keep reminding us.  But sometimes we need to ask for help, and the sooner we face that the better. 

And sometimes--maybe all the time--we need to remind the nondisabled world that it ought to meet us halfway, at the very least.  We might not want favors or special treatment, but we shouldn't have to do all the work of inclusion ourselves.  Because all the guts and bravura (or hairspray, makeup, bangles, etc.) in the world won't get your wheelchair up a flight of steps or even get you that job or that relationship.  The other side has to be open and affirming of us, disabilities and all.

Disagree?  Please let me know.

***
LA-based journalist Ben Mattlin, who was born with SMA, is the author of MIRACLE BOY GROWS UP: How the Disability Rights Revolution Saved My Sanity, available now for pre-order from Amazon.com and BN.com--for more info, go to www.MiracleBoyGrowsUp.com

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.

###

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.

###

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.

###

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 on 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…