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. 

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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.

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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.

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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…