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 ...

TWO SCORE AND TEN

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

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

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

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

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

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

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

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

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

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

Are there still things to do?  Of course!

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

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

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

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

I'm game!

Anti-Smoking's Monsters

Here's a column that never got printed or aired –

A recent Public Service Announcement on TV features a girl of about 12 lighting up a cigarette and then morphing into a wheezing, raspy-voiced woman with a hole in her throat.

Disturbing, yes. But for me, the real problem is the woman at the end looks and sounds an awful lot like me. And I've never smoked.

I'm a lifelong wheelchair user because of an inborn neuromuscular weakness called spinal muscular atrophy. Which, among other things, makes me especially susceptible to breathing difficulties.

The ad I'm referring to comes from California's anti-smoking effort, but similar ones appear elsewhere. No doubt their messages are clear and effective. And nobody is a stronger supporter of the cause than I am. But when I see them, I can't help feeling these images are a public DISservice to people like me because they exploit people's fear of disabilities.

I'm sure those involved mean no harm. They simply want to get their stories out there. The actress with the tracheotomy hole, Debi Austin, for example, says she likes to scare people about smoking. She's made a kind of career of it. But why choose this particular method for imparting this important message? Why not X-rays of cigarette-blackened lungs, say, or gravestones? Instead, these commercials paint severe physical disability as your worst nightmare. A fate worse than death itself.

It's not just the lung-cancer brigade that does it. An anti-drunk-driving ad several years ago showed a young man in a wheelchair as a similarly frightening symbol of the dire consequences of carelessness, stupidity, or hubris. Like Dorian Gray's portrait, these images reflect remorse, or punishment – horror stories even more real than the witches and goblins of old fairy tales, which were created to teach children not to talk to strangers or venture into shadowy places without adult supervision.

Yes, people with physical deformities have been exploited as cautionary totems for a long time. But aren't we supposed to be more enlightened and inclusive nowadays?

Don't get me wrong. I don't want to ban cautionary PSAs. Cigarettes are especially bad for those of us with breathing difficulties, who can suffer terribly just from being in the same room as a smoker. But that doesn't justify frightening kids away from people who look and/or function differently, just to educate them about very real dangers.

My two daughters learned Cigarettes Are Bad before they learned to ride a bike! There ARE ways. The old "this is your brain on drugs" ad taught a similar lesson without depicting drug users as grotesque creatures to shun and avoid.

So I'm hopeful. When I was a kid, in the 1960s and 70s, you didn't see mixed-race families on TV. Things can and do improve. Perhaps when my kids are my age, we'll recognize that real people – with warts and all – shouldn't induce fear. In fact, sometimes the most dangerous threats are the ones that aren't unattractive.

Hey! There's a message I could support! That would be a real Public Service.

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