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…