Conversations about Inter-Abled Romance, part 3

"The first time I taught her how to lift me, that was like a big step in the relationship!  She was nervous but she wanted to try it, because we couldn't really be intimate with me sitting in the wheelchair," said Shane.  "So I told her it's fairly easy.  I don't weigh that much.  I kind of assessed that she was fit enough to be able to do it.  [It's] something I have to think about when I'm talking to new people.  I immediately size them up and figure out if they'll be able to lift me or not.  I don't have any type of lift device in my house or anything."

I asked if this girlfriend had any kind of experience with people with disabilities of any kind.  "None at all," he answered.  "She was in one relationship before me.  But no one who had a disability."

Though it was a new experience for both of them, in different ways, they managed matter-of-factly.  Honesty, open-mindedness, patience, and perseverance got them through.  "We were able to be intimate once I was out of my chair," Shane continued.  "I was 19, and that was the most amazing experience of my life.  It was different [for her], obviously, but she didn't mind it.  I was able to do enough on my own that it worked out."

But that's not the end of Shane's story.  As if in answer to my unspoken question, Shane told me that good sex alone wasn't enough.  "A few months later," he went on, "I was really thinking about us, and all that, and I realized that I didn't really connect with her.  The only reason I jumped on it was because she was the first person who really wanted anything more than friendship with me.  That was really tough.  I didn't want to break up with her if I was never going to find someone else.  I didn't know if she was, like, an oddball. … At first I lied to myself and said, Oh yeah, it's much deeper.  But over time I admitted or realized that she was not a person I enjoyed being around.  So yeah, I had to let her go."

He said his "conscience wouldn't allow me to be with her if it was only for the physical stuff."  Which struck me as a mature observation for a guy who was at the time only 19.  "She understood that I was young and inexperienced and didn't really know what I wanted yet," he reflected, adding that they still talk occasionally.  They're still friends. 

The woman was 22.  I began to wonder if an age difference was a key element to interabled attraction.  After all, ML is three years older than I am. 

Shane soon put me off this thought.  "My second relationship was kind of the opposite of that one," he said with a chuckle.  On his blog, he'd requested volunteers for a nonprofit video project.  "This one girl from Florida was one of the people [who responded] that I selected—and really it was completely business," explained Shane.  "We worked together that summer from a distance.  She stayed in Florida.  And we worked via Skype and texting and email and all that."

She was only 18; Shane was now 20.  Working together, they became close friends.  "Probably my best friend, I would say, that I had at that time [though] we had not actually met in person."

Even after the video project was done, they kept in touch.  "We Skyped every night, pretty much, and it got to a point where I told her that I liked her and she told me that she liked me, more than friends," Shane recalled.  "But because of the distance and some hesitations that she had about everything, including my disability, she just finally said I'm not ready to be in a relationship yet so let's just hold off.  It hurt but I understood and I didn't want to push her."

Then came a surprise ...

Conversations about Inter-Abled Relationships

Lately I've been toying with an idea for a new book.  The proposal is to explore relationships between people with severe disabilities and their able-bodied partners.  My assertion is that we enjoy a level of closeness that other couples, if they knew, would only envy.
 
Here's an opening salvo …

I Didn't Want To Break Up If I Was Never Going To Find Someone Else

So many terrific young disabled folks—of both genders—feel not just rejected but utterly overlooked and ignored in our sexed-up culture.  Today the battle cry of disability activists invariably includes the testy assertion, WE ARE SEXUAL BEINGS!  It's a tremendous leaden loneliness. And they're not wrong to want equal access to …  all things.  That's the ultimate litmus test of civil rights. 

###

To get an accurate picture of the current climate, I asked a young man with a disability similar to mine about his romantic exploits.  Shane Burcaw is a 22-year-old blogger and author of the young-adult memoir Laughing At My Nightmare.  As charismatic and funny as he is to read, his biography could give one a different impression.  He lives at home with his middle-class white parents and younger, nondisabled brother in suburban Pennsylvania.  He uses a motorized wheelchair and weighs just 64 pounds.  Like me, he was born with SMA type 2. 

To skip over the boring scientific parts about SMA, just scroll down a few paragraphs.

###

SMA is a broad diagnosis broken up into four distinct types, depending primarily on the age of onset.  Mine became evident when I was about six months old, which is on the cusp between types 1 and 2.  (Type 1, sometimes called Werdnig-Hoffmann Disease, manifests in infancy, even at birth.  Half the babies diagnosed at birth die before age two; their hearts and lungs become too weak to go on.)  At six months, I wasn't sitting myself up the way my older nondisabled brother had.  When I was put into a seated position I tended to fall over.  Doctors told my parents I'd never be able to cry very loudly because I lacked the necessary breathing capacity.  That, Mom concluded, was the first clue that doctors didn't know what they were talking about.

To be clear, spinal muscular atrophy is a group of genetic disorders with varying degrees of severity.  The latest statistics indicate that one in every 6,000 babies is born with some version of it.  SMA might not be noticeable at first.  Symptoms can strike anyone of any race or either gender at any age.  Or you might be a carrier and not know it.  One in every 40 people has the gene, or some 7.5 million Americans.  If two carriers sprout a child, the kid will be a carrier and has a one in four chance of actually developing SMA.  Which is why my siblings don't have it, though it tends to run in families.

The U.S. National Institutes of Health explains the cause of SMA as "a loss of specialized nerve cells, called motor neurons, in the spinal cord and the part of the brain that is connected to the spinal cord (the brainstem). The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement."

Everyone who has it is different.  In my case, the progression of the atrophy plateaued when I was about six years old.  That is, the rate at which I continued getting weaker slowed.  But—as I learned with great shock and a deep-seated sense of betrayal in my late-20s—it never stops completely.

###

Shane is palpably aware of the steady progression of his SMA—not daily, to be sure, but unavoidably.  I confess that, at first, I was turned off by his blog and book's implications (the blog bears the same name as the book).  The very idea of "laughing at my nightmare" doesn't seem to serve the cause of greater disability inclusion.  Don't we want to get away from pity mongering, the notion that we're ghoulish nightmare visions?  But now that I've gotten to know him and his work better, I've had a change of heart.  Maybe he's actually turning the stereotype on its head.  What's that old philosophy about how accurately naming something removes its power?  By turning his circus spotlight on that nightmare stereotype, he's helping lift the mystery and fear.

Shane's charm is certainly overpowering.

"Two or three years ago, I had never had a romantic relationship," he told me.  "I grew up with, you know, I had tons of friends, lots of friends who were female.  But it would never go any further than that.  I never pushed it with any of them because I didn't want to hurt relationships that were already perfectly good.  So at that point I was just kind of, like, whatever, maybe I just won't have a girlfriend.  Ever."

At that I didn't know whether to laugh or cry. 

To read more about my conversation with Shane, check back here in a couple days…

"TOMORROW," IT SEEMS, IS STUCK IN 1977

A friend in theater recently emailed me a perplexing question.  He's working on the touring company of "Annie" – you know, the musical – and wanted to discuss the curtain call.  "There is some debate as to whether FDR bow in his wheelchair.  What do you think? Is there something ableist about an able-bodied actor leaping out of a wheelchair?"

While you ponder that, I should explain that I saw "Annie" on Broadway in the late 1970s, when I was a kid.  I was so young (read: ignorant) that I had never even heard of The New Deal before.  I saw the first movie version in 1982, when my younger brother was a kid, and the 1999 Disney remake with my kids.  My kids were also in a school production a couple years ago.

So I know the delightful, irresistibly sappy kid-friendly musical all too well.  And it is to be commended for showing FDR in a wheelchair, an accurate and important historical milestone for those of us who use wheelchairs. But honestly, I don't recall ever noticing how the FDR character bowed at the end.

To my friend, I first said "I dunno" but then, on second thought, I DID know.  Maybe it was the word "leaping," but I realized I would personally be offended if I saw the FDR character rise from his chair unassisted to take his bow.  To me, it would feel as if the actor were saying, "Don't confuse me with one of them!  (I can do dance parts, too.)"

After all, I said, does Daddy Warbucks remove his bald-head wig to clarify he's not actually folliclly challenged? Does Annie herself toss off her red curly wig and binder to announce she's really a busty 21-year-old blonde (or whatever)?  Is it not customary for actors to stay in character during the curtain call?

He accepted my answer.  But then… 

Then my friend came back with this: What if the wheelchair isn't onstage during the bow?

Again, I reflected.  That helps, I said – just seeing him in a standing position, not actually in the act of standing up from his wheelchair (which the real FDR couldn't do unassisted anyway) – would remove some of the sting.  But I'd still prefer to see him remain in chair and bow while seated.

Well, my friend is not the director or producer.  He has no real power over such decisions.

And what was the final decision?  FDR would only stand up from his chair while the curtain is closed.  He would exit the stage, leaving the empty wheelchair behind.  Then, once the curtain was open, he would walk in to take his bow, then sit back down in the wheelchair to join the company.

Not perfect but not bad, I thought.  Still, I wondered why he of all the actors should break character for the final curtain.

It turns out the director is none other than Martin Charnin, who directed and wrote the lyrics for the original Broadway production back in 1977 and has been more or less involved in its production ever since.  Yes, he's the man responsible for the words to "The Sun'll Come Out Tomorrow" and "It's A Hard-Knock Life."  Gotta admit, they're catchy tunes.

Martin Charnin

Anyway, Martin does have the power, and he said this is how the FDR character has always taken his bow – since the original production. 

Who am I to argue with success?  It's not a big deal, right?  Or is it?

I asked my friend, What about the mysterious turbaned assistant, called Punjab in the original movie (played inexplicably, though well, by Trinidad-born Geoffrey Holder)?  He was taken straight from the original 1930s comic strip, but I can't recall if he appeared in the original Broadway show, perhaps under another name.  Anybody in the Blogosphere know?

At any rate, he was an offensive stereotype and is not part of the current production.

    

 

(Click here for musical number from the 1982 film, with Punjab & other stereotypes.)

This led me to wonder how certain ideas and images become unacceptable while others can still slip by almost unnoticed. Many racist stereotypes have gained a degree of attention, of outrage, but equally offensive images of disability go by almost unrecognized.

To be fair, no one is suggesting that the FDR character NOT have a wheelchair. That was somewhat groundbreaking in 1977.  And seeing the actor standing at the end doesn't take away from that.  But for me it still jars a little. 

Note that this isn't the first time such questions have been raised.  Several years ago it was the cause of much debate in the design of the FDR Memorial in Washington, DC.  The designers eventually decided – wisely, I think – to only portray the president in a seated position.  In the main statue, you can't actually see what he's sitting on, but the smaller, lesser statue does show him in his homemade wheelchair.

Too bad that, 16 years after the Memorial debate, such questions can still arise. My young friend knew enough to be concerned, which I appreciate, but less enlightened folks still have no idea that there's even an issue.  (I wonder what the new movie starring Jamie Foxx will be like in terms of challenging stereotypes.)  Or am I being ridiculous?

What do you think?

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.
 
###

FAIRNESS FOR DISABLED WORKERS (AT LAST)?

In the last week of August, just in time for Labor Day, Vice President Joe Biden announced that the Obama Administration would pursue requiring federal contractors to fill at least 7 percent of their workforce with people with disabilities.

He was speaking at the American Legion convention, but the news resonates for all disabled Americans, not just the veterans he was addressing.

The specific target of 7 percent will give teeth to what has been a vague affirmative-action goal since President Nixon signed the Rehabilitation Act of 1973.  It follows upon President Obama's earlier promise to make the federal government itself a model of equal opportunity employment.  But this additional step is particularly meaningful because it fulfills a 40-year-old bipartisan promise to, as Biden said, "help ensure equal rights and employment opportunities for veterans and people with disabilities."

I was not yet 10 when the Rehab Act became law, but I was already a wheelchair-user.  I was born with a neuromuscular condition called spinal muscular atrophy, which rendered me quadriplegic.  The Rehab Act was the first far-reaching piece of legislation defending the rights of folks like me.  It took four more years, and nationwide protests and sit-ins, for one of its most important provisions—Section 504, which requires equal access for the handicapped in federally funded institutions and programs—to become codified.  As a result, I was able to attend almost any college I wanted.  At least in theory.  The law went into effect in 1980, the very year I graduated from high school.

Of course, that transition wasn't easy and this one won't be either.  At the time, some universities were frank about the challenges of accommodating a student in a wheelchair.  "It'll be damn difficult," one admissions officer told my father.  Others bent over backwards to avert a lawsuit, even accepting me before I had actually filed an application. 

I ended up at Harvard, one of its first—if not the first—quadriplegic freshmen admitted.

After all these years I assumed that the Rehab Act had done its job.  It had gotten stuffy old places like Harvard to accommodate students like me.  I did not know about federal contractors, about Section 503.

Some might say that in clarifying and enforcing Section 503, which merely required federal contractors to "develop and implement a written affirmative action program," the Obama Administration is fixing a problem that didn't exist.  To me, though, it's more accurate to say the president went out of his way to bring people with disabilities into parity with other minorities and women.

Indeed, the issue was barely on disability-rights activists' back burners.  A hotter concern has been the UN's Convention on the Rights of Persons with Disabilities, to safeguard disability rights internationally.  Or how to stop Medicaid from shunting recipients into expensive, neglectful nursing homes instead of allowing them home-based, self-directed care--a cause the president seems to favor, in his support of the Olmstead ruling.

But employment disparities should not be overlooked.  In June, the U.S. Department of Labor estimated that unemployment among employment-age people with disabilities was 14.2 percent, almost twice the 7.6 percent for the rest of the population.

Granted, some disabled people may be easier to employ than others.  In fact, an earlier Labor Department proposal for enforcing Section 503 called for a lower threshold of just 2 percent for the most severely disabled.  But we have to face the fact that there is still unwarranted prejudice.  Even with my Harvard degree, I never could find a job.  Instead, I took freelance writing assignments.  Voice-recognition computers certainly upped my productivity.  I'm using it to write this.

So it might take a little creative thinking, flexibility and technology to meet these employment goals.  Is flex-time an option?  Can some of the work be performed at home?  People who live with disabilities tend to be expert problem-solvers and self-starters.

My hope is that the new standard will help people with disabilities take control of their own lives and reduce their dependence on government subsidies. More than that, I hope it will help show the nondisabled coworkers what we're made of.  After all, the point of diversity and full inclusion is not just to benefit the marginalized.  It is to create the kind of synergies that can only come from expanding one's boundaries, from welcoming the new and different, and allowing the cross-fertilization of ideas. 

It's unfortunate this important piece of civil-rights progress was overshadowed by the following day's tributes to the 50th anniversary of the March on Washington.  It's surely something Martin Luther King would have supported.

###

Part 17 of "Miracle Boy”

I've been off-line for the past 48 hours. I hate to admit it, but it's been a little like learning to breathe without air.

How dependent we become on our machines! Or is it just me?

Prediction: In the next few years, current modems and WiFi will become obsolete. We'll all connect to the Internet (and one another's computers) via satellites, as iPhones and such do now.

I'm tempted to make the move now, but it's not quite cost effective for me yet.

Enough! On with the wedding chapter --


Three weeks later they set a wedding date—December 27, which will be Paula's twentieth birthday.


Yet a few days before the wedding, Mrs. Plotnick confronts Everett. "If you're having second thoughts, say so now. Hurt my daughter before the wedding, not after."


It's uncanny! Has Everett let slip that he's feeling too young to be sure of anything, let alone love, and thinking Paula, though poised and self-confident, is practically a child who couldn't know what she's doing? "Don't be silly," he says.


"Come now. You can tell me. If you don't want to face Paula directly. Be a mensch."


But isn't a mensch supposed to be married, certainly by his age? It's the right thing to do. After all, to put his cold feet in perspective, he's never sure of anything.


In retrospect, their intellectual compatibility notwithstanding, their backgrounds are substantially different. Everett's family is well-to-do. His father, Jacob—whom he can't stand—is a crass, shrewd businessman. Arriving at Ellis Island at age 12 all alone, in steerage from Russia by way of England, Jacob Mattlin made his way to Columbus with nothing. He had distant family there who provided scant help, only a geographical destination. Once settled in Columbus, he launched a successful cooperage. Some of his customers may or may not have been bootleggers. Jack, as he became known, married a beautiful American woman—the daughter of a previous generation of Russian immigrants, who had grown up in the neighboring state of Kentucky—and they had two sons. When Irwin, the younger one, died at the tender age of nine from influenza, Jack and Jennie went and had another. They named the replacement boy Everett—a goyish appellation, connoting their assimilation. The Great Depression, and possibly the repeal of Prohibition, wiped out Jack's barrel business, but the scrappy entrepreneur pulled himself up again by buying property cheap. Soon he had a profitable real-estate business. The legend goes on and on. Everett's never sure how much of it's true, but he never could live up to his larger-than-life poppa. Unlike his brother Morrie—sixteen years his senior!—who played football at Ohio State and served in World War II, and would soon inherit the family business.


For the bookish Everett, having a child with a disability years later is another sign of failing to live up to some standard.


By contrast, Paula's nebbishy father, Samuel Plotnick, the germs-obsessed struggling attorney, born in Ohio to immigrant parents from Lithuania, was unyieldingly pious. His wife, the former Molly Bernhardt, of Baltimore, who emigrated as an infant with her family from Latvia, maintained an Old World stoicism. What was the use in complaining about her husband's religious strictures or the miserable, hardhanded life he made for them? This became her way in all things. When as a small child Paula tripped and scraped her knees, Molly told her not to cry. "Scrapes are a fact of life. Scabby knees mean you're having fun! Now pull your socks up before your father comes home from shul."


The message was clear: Feeling sorry for yourself does no good. Years later Paula reverts to this lemonade-from-lemons coping mechanism in reaction to my disability.


Given all their differences, perhaps it's not surprising my parents' marriage dissolves after seventeen years.

[My own marriage has now outlasted theirs by four years!  But who's competing?]

Part 10 of "Miracle Boy”

And so we return to "Miracle Boy Grows Up."  Here's the next installment --

Walden's old location, at W 88th Street & CPW, courtesy http://www.thecityreview.com/uws/cpw/cpw279.html

“…a high-rise apartment building at 279 Central Park West that replaced the Italian-Renaissance-palazzo-style Progress Club that was subsequently converted into the Walden School.”

I start first grade at the Walden School, on West 88th Street. It's a regular, albeit progressive, private school with a liberal admissions policy. I mingle with kids of all colors, many scholarshipped, many others from the creative elite of the Upper West Side. As the only wheelchair-riding student, I'm a pioneer of sorts. It's not exactly wheelchair accessible—each morning Dad has to schlep me, in wheelchair, up a small flight of steps at the entry, and every afternoon Mom hauls me back down again.



One evening I overhear Mom and Dad talking in the kitchen. They are grateful for Walden. Dad says he isn't sure about its prestige but Mom says it will be fine. Best of all, she says, Walden doesn't see me as a typical handicapped kid. Dad agrees. It's making an exception for me, he says.


Judy, my new class teacher—a tall, slender woman with dark hair and warm eyes as expressive as a cartoon character's—quickly makes accommodations. For example, at the end of the first week she gathers the entire class in a circle and introduces me. Just me! She explains why I use a wheelchair and then says something funny:


"Would any of you like to touch Ben's wheelchair?"


If they touch it, she explains, they won't be afraid of it. She is making a kind of case study of me, testing the concept of mainstreaming for her master's thesis.


I'm startled that anyone would be afraid of my chair. Yet right away a few hands shoot up, then more. Soon I'm surrounded by grubby eager fingers. Many of these kids quickly become my new best friends. Within a day I'm appointing a trusted subset to be my first choices for wheelchair-pushing. We make a game of it—they compete to be my Chief Wheeler, and I choose the winners. "You were totally accepted by your classmates because you were so cute and so bright, just like everyone else, except you were on wheels," recalls Judy, my teacher, four decades later.


At the end of the semester she notes on my report card that I have "leadership skills." If so, it comes from necessity. It's a survival skill, a form of gentle manipulation that maybe all handicapped kids learn. Taking charge. Putting people at ease.


One kid, however, isn't so easy to figure out.

[For more, come back in a few days ... and thanks for reading!]

Part 6 of "Miracle Boy"

A friend has a clever blog about, most recently, idiotic comments from strangers about wheelchairs--specifically, about YOUR wheelchair. The one you're riding in. The one you depend on.

Anybody who's ever used a chair or been close to someone who does recognizes the kind of inane things he's talking about. Things like: "Do you need a license to drive that thing?"

Why, he asks, do strangers never cease to make such strikingly uncreative, annoying comments toward our wheelchairs?

Of course, such comments are not unique to wheelchair-users. Most distinguishing characteristics--tallness, shortness, large nosed-ness, other well-endowed body parts (!), excessively curly hair--are probably prone to it. Names that sound funny to people who aren't used to them are frequently made fun of, too. It's no big deal. There are more important issues to complain about, more urgent battles to fight.  Right?

But still, there it is. A small piece of what's sometimes called "disability culture."

So I'll refer you to Mark's blog, and then get on with my story...

Disability As A Social Condition: 1967-1971

I know they are discussing me, but I don't know why. I can't hear a word or see them to read body-language. They have closed the door. I'm on the outside, sitting in my wheelchair between a beige sofa and a beige armchair in the mostly quiet, fluorescently lit, antiseptic waiting room. I'm nearly six years old, and I have nothing to do.


Why didn't Alec have to come, to keep me company? Not that he would play with me. My older brother is nothing like me. A thin, spirited boy with straight dark-reddish-brown hair and a gap between his front top teeth, he's brainy and competitive, likes to play chess and baseball and go bowling. I, on the other hand, have big blue eyes and a mop of unruly blond hair, an adorable Cupid look. Mom's friends say they wish they had my curls, which I don't understand because I hate my hair. I want it to be straight, like I see on TV.


On Saturdays Alec goes to a sports camp while I watch cartoons, and in the summer a sleepaway camp in New Hampshire while I stay home and look for ways to pass the time.


Now, in the hermetic waiting room, I imagine leaping through the big, half-sunny window, kicking past the rattling glass and landing catlike on the street below just in time to chase away a squadron of bad guys. I'd roll on the ground to avoid their gunfire and then grab a loose drainpipe or tree branch and knock them all out till the police come …


I can pass a lot of time imagining highly athletic action scenes. But alas, I soon discover it's not enough time, and my boredom resumes. I can't hold up a magazine or book, and there's no table I can get to to roll my toy cars on if I had any toy cars with me.


Why do I have to go to so many doctors?


In truth, Dr. Spiro is one of my favorites. Every year, before the private parent conference, he examines me and talks to me in a soft, cheerful manner. He asks me to squeeze his fingers, follow his penlight with my eyes, stick out my tongue, feel the vibrations of his tuning fork against my knees and ankles (and tell him when the vibrations stop) and perform other easy tasks to measure my muscles and nerve responses. It always seems to impress him that I'm not stone paralyzed or retarded!


I like the attention. I don't mind being on display. It's best if I can stay in my wheelchair and not get lifted onto his hard, narrow examination table and have my clothes taken off. But either way—in my chair or on his examination table, dressed or naked—I try to put on a good performance. I'm famous for my good humor and bravery. I never even cry at shots.

[Stay tuned, dear reader…]

Part 4 of "Miracle Boy"

The picture is irrelevant. It's Microsoft's clipart. But I figured I needed some illustration here, and it might as well be one that could draw in a few curious readers. (I considered uploading nude photos, but I didn't want to pander!)

Anyway, here's the next installment of "Miracle Boy" Grows Up...


Parents of kids with disabilities tend to be unduly overprotective. It's the extra layer of guilt. From the start they feel responsible for their child's limitations. It doesn't matter if the disability is from an accident or heredity; parents see it as a gnawing reminder of their own shortcomings. They feel intrinsically blameworthy. I'm grateful my parents aren't overly overprotective, but they feel the guilt. For Mom, the day she learned my floppiness was permanent and inborn was the worst of her life. She tells me this whenever I ask and even when I don't. That's partly because she's concerned about my future, but she also questions what she did to deserve this. For Dad, the guilt feelings evolve into a hunt for someone to blame besides himself.

Many parents turn angry—an animal rage directed at doctors, bureaucrats, God or even the child him- or herself. Sometimes these feelings spark a crusade for remediation or justice, a frantic pursuit of a lawsuit, a cure, or political action. But whatever the merits of the cause, the fire is stoked primarily by the need to alleviate the parent's unbearable burden, which is not necessarily in the child's best interest.

"You must, must, must remember the seat belt," Mom scolds Dad, who stands silently nodding. "How could you forget?"

A spate of rhetorical questions follows. Could she trust him ever again? By extension, if my own father can forget my seatbelt, what about other people to whom my care is entrusted?

"This cannot happen again!" she says repeatedly.

Then Mom's hard tone turns abruptly to me. It's in her Republican upbringing to have no patience for self-pity and whining. Look out for yourself. Don't wait for a handout. She's always quick with advice to step up to the plate. She keeps an ongoing, or quickly composed, mental to-do list which she likes to whip out like a gunslinger.

"And Ben," she says then, "Ben, it's your responsibility to check if the person with you has forgotten your seatbelt. Do you understand? Do you hear me? Ultimately it's your responsibility. You must always, always speak up. Understand?"

Not yet four, I'm stunned yet struggle to comprehend. I try to take her admonitions as seriously as I can. Speak up. Don't be shy. Ask for what you need. People aren't mind readers. You've got to speak up. I hear these phrases a lot. Light a candle instead of cursing the darkness. The squeaky wheel, etc.

In those days, the mid-1960s, there are scant resources for my parents to draw on, other than doctors. No support groups. No disability-rights organizations or independent-living centers. No sense of a shared, group identity disability-wise, except perhaps for disabled veterans. Any notion of the disabled as a class of ordinary citizens, a population worthy of civil rights, is years away. The first Civil Rights Act, passed in July 1964, when I'm 19 months old—two years before my garage accident—applies almost exclusively to Blacks, of course. It never occurs to anyone, let alone my parents, to extend antidiscrimination and equal opportunity to people with disabilities. Not like in the early 21st century, when we know that some 51 million Americans—or 18 percent of the population—have a disability, making us the single largest minority. The percentage of disabled Americans in the 1960s is probably smaller, though, because medicine and technology aren't yet doing such a good job of keeping us alive.

Medicine aside, to survive with a disability involves equal doses of toughness, pluck, and grit mixed with humor, a stiff upper lip, love, luck and money. In those days, and perhaps still today, you'd best follow the Franklin Roosevelt model: Hide the handicap and its apparatus as much as possible. Minimize them. If and when they slip out, simply flash a winning grin. Use your limitation as a sign of strength and courage, not sorrow, shock or loss. An emblem of overcoming, of achieving despite all.

Or is that best?

***

Part 1 of "Miracle Boy”: Introduction

I was training my latest personal-care attendant in how to wash me ("first the soap . . . "), dress me ("slide one foot into the jeans leg, then the other . . . ") and lift me into my motorized wheelchair. He was a UCLA student with no medical background, which is just the way I like it. I do not want to be called "the patient."


Nevertheless, while tying my shoes he asked a question that was dangerously close to my tolerance boundary: "How do you stay so positive?"


I feel like I've been called "inspirational" more times than Jesus, Muhammad and Moses combined, but something about his question felt different. My earnest young employee was not commenting about something over which I had no control—the fact that I'd lived all of my then-42 years with a severe neuromuscular condition—but about my attitude, an attitude I had adopted and nurtured, a doggedly honed personality trait, a survival strategy, perhaps. He might have asked the same question if I didn't have a disability.


Usually the word "inspirational" was followed by, "You should write a book about your life. It would be so inspirational for so many people!" No thanks. In fairness, this may be prompted partly by the fact that I write for a living. I'm a contributing editor for Institutional Investor and, until its recent demise, Dealmaker and other magazines for the past 20 years. But please! Let survivors of abuse, cancer or war coax tears from readers' eyes. Not me.


To his credit, my new attendant did not in fact resort to the book spiel. What he did was get me talking, and that's when I realized it. I had reached a level of maturity from where I could look back at my varied experiences and not feel embarrassed. A book about my life would indeed be compelling and gripping. Especially considering the many changes in medicine, technology and disability rights I'd seen.


After all, I was the “miracle” who wasn't supposed to live past 10. Born with a rare form of a rare disease, spinal muscular dystrophy, I grew up in New York City (Dad was editor-in-chief of GQ, Mom a former television producer) and attended regular private schools before there were any laws protecting my right to do so. (Some cities even barred the disabled from appearing in public!) From one of my earliest memories—falling out of my wheelchair into a dark, smelly garage—to learning to use my brain and verbal skills to get what I needed, I always attracted friends and, in contrast to common lore, rarely felt taunted by school bullies. At 10, though, after my parents' divorce, I wrestled with divided loyalties—Dad took better care of me physically, while Mom was more supportive emotionally.


Eight years later I became one of Harvard's first severely disabled wheelchair-using freshmen—if not the first. Then Mom got sick. The next summer she was dead.


After college, I shacked up with my nondisabled, non-Jewish girlfriend and together we headed to L.A., where we got married and, after more than four stressful years in the infertility maze, had two terrific daughters.


It never occurred to me that someone like me wasn't supposed to do all these things. How indeed had I managed? What kept me going?
      [More in two days.]

Medical Progress Rolls On...

A short-ish blog this time … because I've been continuing to think through things already posted, and don't have much to add.

First, I'm grateful for all those who've commented intelligently (here and on Facebook) about my entry on the role of medical research. I'm trying to refocus my comments into a piece for NPR. I'll keep you posted on how that progresses.

Second, this past week I was struck by some new material from the Muscular Dystrophy Association about spinal muscular atrophy. I may well be stupid on medical and scientific issues, but it seems to me that the more we learn about the diagnosis the less we really know.

What do I mean by that outrageous assertion? First, one genetic mutation was discovered that seems to be the culprit behind four different types of SMA. I believe I was Type 1 originally, once upon a time--the infantile and progressive version also known as Werdnig-Hoffmann Disease--until I outlived that prognosis and, thus, instantly became Type 2, which is early onset but with a somewhat gentler progression. Types 3 and 4 start showing symptoms later in life, as far as my understanding goes. (But I'm not a medical professional, so please don't take my word for it.)

Then, more research showed another genetic mutation that causes SMA--a different type of SMA (or should I say another different type). As I understand it, this one happens in adulthood, too. There may even be others, but that's where I get lost.

Even within this mishmash, I believe there are exceptions ... or sub-types. In my case, I showed symptoms of muscle weakness as early as six months old. I was a "floppy baby." But the progression of my atrophy slowed considerably when I was about six years old. The word my doctors used then was "plateaued," but I'm not sure neurologists still use that term. I'll have to ask.

Anyway, I assumed that meant I had gotten as weak as I would and the active part of the "disease" was done. It had done its damage and hightailed it. I was wrong, as I learned when I was in college and shortly thereafter. Things can still go weak--and not at a steady, gradual pace, it seems to me. It's something more random.

Which doesn't matter, except it makes it hard to plan for.

New evidence--more anecdotal than from clinical research--shows that when people with SMA do live to an advanced age they can suddenly have a relapse, or let's say a resurgence or flareup. Basically, whatever muscles are left wear out. They age prematurely. Which to me sounds very much like postpolio syndrome. There was an article about postpolio syndrome in the past week. I don't think much has been done about post-SMA syndrome, if that's even an appropriate way to call it.

So even I, at 47, am not necessarily out of the woods yet! (Cue dramatic music.)

The point, once again, is not to define us (or ourselves) by our diagnoses.

As I've said before, I understand parents who are desperate for medical advice and treatments for their kids. I didn't used to. In fact, I used to resent it, the efforts my parents had made to "cure" me. But age and perhaps parenthood has given me a kind of wisdom. Or empathy, at least. I mean, I wouldn't want a parent who didn't do all he or she could for his/her kid's health and safety.

Yet to me, the better mission toward improving the lives of people with disabilities involves improving the societal stuff--fairness, openness, tolerance, inclusion, access and so forth. Those goals are more easily and quickly met, for one thing. For another, the pay off goes to all people with all types of disabilities--the old and the young, the dying and the living.

There was also new evidence published this week that some people who are said to be in a persistent vegetative state are actually more conscious--or at least do have more brain activity--than was previously thought. Many of us have suspected this. It's consistent with what I've heard from people I know who have come out of so-called vegetative states.

The connection here is that this shows yet again the limits of medical knowledge. Doctors are people too, and as such they can be wrong. There is often greater potential in the person than the medical establishment--if that's not too abstract and generalized a term--might expect.

Hey! This turned out to be longer than I expected!

If you like what you're reading here at all, I'm wondering if it'd help to ask you all to write NPR (or write NPR via this form) and say you want to hear more from Ben! (Sorry for the shameless self-promotion. But hey, we're all in this together, right? Hope so.)

Wherever you are, enjoy the snow, the rain, the Super Bowl, and whatever else is happening this weekend! And thanks for stopping by.

Of Harrison Ford, Brendan Fraser & Jerry Lewis

http://extraordinarymeasuresthemovie.com/

The new movie "Extraordinary Measures" has my mind running in circles.

No, this column is not a film review. Sorry.

I'm not actually writing about the movie itself, but what it calls to mind for me.

As engrossing as the Harrison Ford and Brendan Fraser flick may be, let's face it. It's at least partly about a medical breakthrough … about how even life-saving treatments are sometimes only possible with mega-funding. Especially for rare conditions, where the payoff of success--the profit potential--is dubious.

Sad but true.

Yet what's bugging me is the way this message echoes the Muscular Dystrophy Association's mantra. You know, "Send money or these kids will die!" Or words to that effect.

I've never liked that message, the implied threat. I feel it exploits kids with disabilities, turns them into one-dimensional objects of pity.

Well, guess what? MDA IS claiming a role in the true story on which "Extraordinary Measures" is based.

The true story involves the development of Myozyme, the only FDA-approved treatment for the rare, progressive neuromuscular condition called Pompe. Which affects one in 40,000 people, according to www.pompe.com--depleting their muscles until they become too weak to live. Myozyme isn't a cure, but it can slow Pompe enough to save lives.

It turns out MDA really was one of the behind-the-scenes funders of this life-saving intervention. I double-checked.

"Many organizations and individuals who worked over many decades on Pompe disease should take credit for Myozyme," Lori Gorski, associate director of corporate communications at Genzyme Corp., the Cambridge, Mass.-based pharmaceuticals concern that developed Myozyme, told me by e-mail. "The MDA helped support patients who took part in clinical trials of Myozyme and also sponsored early research in Pompe disease."

OK, but the irksome thing for me is this: For decades, one consistent primary theme of the disability-rights movement has been that we're fine as we are. We don't need fixing. We need acceptance, accessibility, respect, integration, education, employment ... NOT a mad search for medical miracles.

Of course, there's nothing wrong with medical interventions that extend or sustain or improve our lives. In fact, I have personally benefited from numerous scientific advances. Who hasn't?

And to be fair, some people DO want to be cured of their disabilities. Especially those in chronic pain or facing imminent death. Prominent disabled folks like Michael J. Fox and the late Christopher Reeve even lend their names to foundations devoted to finding cures.

But I can't help feeling that focusing one's energies on medical remedies for what are truly societal problems is, at best, a distraction--a misdirection. If you're fighting a disease, you're not advocating for disability rights.

Courtesy www.ADAPT.org

Am I unfair? Oversimplify-ing? Surely, it's possible to believe in disability rights AND support medical break-throughs at the same time. Yet I just don't know how a person with a disability can get on with his or her life if he or she is obsessed with finding a cure. Maybe it's me. But isn't the medical message intrinsically saying, You're not good enough as you are? It's not okay to have a disability?

(I think of the African-Americans who used to employ poisonous chemicals to try to straighten their hair and bleach their skin. Malcolm X himself did this, before learning it's the wrong way to rectify the problems of racial injustice.)

I've finally come to partial closure on this. It came to me when I was watching TV and there was a commercial for a new Alzheimer's drug.

What came to me was: there are so many disabling conditions! So many worthy targets for pharmaceutical research. How is one to choose which is most worthy of scarce R&D dollars?

It's great that these treatments exist, and more are on the way. But we're never going to solve all the medical problems. There will always be some people with disabilities. Polio is all but cured, for instance, but you can't stop people from breaking their legs while skiing, or contracting multiple sclerosis, or getting age-related infirmities.

The disability-rights movement seeks to make the world better for all people with any type of disability. Our mission is therefore broader than any clinical lab's can ever be.

After all, what happens to those facing chronic pain or imminent death while they're waiting for a cure? Or those who aren't interested in one.

What's more, a more tolerant, accessible and inclusive society benefits everyone.

Enough! I welcome reactions from readers.

Thank you for the kind words (& keep 'em coming)!

Hooray! To start the New Year off with a bang, my NPR piece was broadcast on Monday morning, January 4, 2010. Judging by the flood of kind e-mail I've received about it, it must have come off all right. I'm gratified and intimidatingly humbled about reaching so many people. Thank you all for listening and writing!

The actual transcript--slightly different from the one on the NPR.org/opinion site--is linked to my professional Web address at www.BenMattlin.com

For anyone who cares, here's the original long version of the Commentary--the one I submitted, before my editor made cuts to save precious broadcast minutes. Read on, keep listening, send links to friends and colleagues, and know that I'm always delighted to hear from you.

A GOOD ENOUGH YEAR

For me, the new year is as much about looking back as looking ahead. At least this time it is.

I turned 47 this past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. Nobody knew that at first. It can remain invisible for many years. Then it gradually, relentlessly weakens muscles.

In my case the weakening began at about six months. My mother noticed I wasn't developing as my older brother had. I didn't sit myself up, or stay up when put into a sitting position.

We now know that about half of the babies who manifest symptoms of S.M.A. die before the age of two. Their hearts and lungs become too weak to go on.

I was one of the lucky ones.

I've used a wheelchair my whole life and no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. Most days I feel lucky. Always have. So why do so many people feel sorry for me?

They don't know me, of course. They don't know that I was lucky enough to grow up in a good family, to graduate from Harvard, to get my writing published, even to marry and father two terrific little girls. I consider myself lucky for a lot of reasons.

Still, people who think they know me from what they see on the outside have said to me, "If I were like you, I'd kill myself."

This is supposed to be a compliment, I think. They mean to commend my perseverance, my pluckiness. So how come I want to say back, "No you wouldn't"?

(Or "If I were like YOU I'd want to kill myself, too!")

Yes, there are some people in terrible circumstances, with painful illnesses, who do want to die. But there are also many, many people living in conditions I don't envy--living in famine, in war-torn countries, or in abject poverty in this country--who retain a stubborn sense of hope and struggle on. People whose lives I wouldn't trade for my own.

It happens every day. Nothing all that extraordinary.

Don't get me wrong. I don't see myself as a kind of modern-day Tiny Tim, pointing out the good in people, cheering everybody up. No thank you. I reject holding myself up as an inspiration, an example of the triumph of the human spirit.

Anybody who really knows me knows that. At home I grouse and kvetch all the time. Why not? It runs in the family. Plus, life is rough. Especially for me, at times.

Like two years ago. 2008. I had to spend most of that year in a hospital bed. A surprise gastroenterological infection required emergency surgery. Then something went wrong under the knife. Myriad dangerous complications ensued. I nearly died.

But here I am to tell the tale. So yes, I do feel lucky. The year just past wasn't anything special. The usual assortment of good and bad. But it was blessedly drama-free, and after its predecessor that was enough to make it a good year.

Sure, I hope for better things ahead. I hope for continued good health for my family and myself. For our country and our world. I hope in the new year to do better than in the year just gone by. To finally get that book contract. To really master Facebook and Twitter. And to do more of these commentaries for NPR.

But even if most of that doesn't work out, I'd still say I'm lucky. Because sometimes just normal life is good enough. And for me, this life--life in a wheelchair--is normal. And that's good enough, too.

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