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 …
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
He lives at home with his
middle-class white parents and younger, nondisabled brother in suburban
He uses a motorized
wheelchair and weighs just 64 pounds.
me, he was born with SMA type 2.
To skip over the boring scientific parts about SMA, just scroll down a
SMA is a broad diagnosis broken up into four distinct types, depending
primarily on the age of onset.
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.
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.
statistics indicate that one in every 6,000 babies is born with some version of
SMA might not be noticeable at
Symptoms can strike anyone of any
race or either gender at any age.
might be a carrier and not know it.
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.
that, at first, I was turned off by his blog and book's implications (the blog
bears the same name as the book).
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
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.
grew up with, you know, I had tons of friends, lots of friends who were female.
But it would never go any further than
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.
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…