Ben Mattlin is the author of “In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance.”
Do you remember being carried in your father’s arms? No? I do.
That’s because my dad was still lifting me when I was in college. See, I can’t walk. Never could, never will. I was born with a genetic neuromuscular weakness called spinal muscular atrophy. I have full sensation, a big and opinionated mouth, and zero muscles.
Tall and broad-shouldered as he is, Dad only stopped lifting me when his back gave out. And I moved out, though not for that reason. I was 21.
Before I got my first wheelchair, at age 4, I moved about primarily on my mom’s slim hip. But after that, as I got bigger, Dad took over moving me in and out of my chair, the bathtub, the car and elsewhere. He’d still be doing it — I can tell he wants to by the way he sometimes reaches for me — but he’s now 90.
I’ve never been all that heavy — 90 pounds at present — due to my lack of musculature. My petite wife can lift me. Still, I recall feeling especially secure in Dad’s embrace. Even when he almost lost hold of me in an amusement park ride a lifetime ago, a story he frequently recounts with horror. My memory: He held on; I was safe.
I’ve thought a lot about what makes the ideal father for a kid in a wheelchair. Dad, a Harvard-educated Fulbright scholar, might seem an unlikely candidate.
Before my birth, he gave up academia to become the first editor of a fledgling magazine soon known the world over as GQ. (He still calls it “Gentlemen’s Quarterly.”) He knew nothing about fashion, but he possessed a definite sense of what it meant to be a gentleman. And that boded well for me.
Of the 13 years he stayed at GQ (before metamorphosing, again, into a financial journalist), he’s proudest not of his celebrity encounters — though I love hearing about Fred Astaire’s disdain for being photographed as a clothing model, Cary Grant’s insistence that war was caused by sexual frustration and how Farley Granger made a pass at Dad.
To him, a gentleman should be not just well-dressed but well-read. That was a key lesson for me, on whom clothes never quite fit right because of my skinny limbs and scoliotic spine. It told me that I could nonetheless bring something valuable to the table. My ideas. My wit.
Throughout my childhood, Dad always proved willing to experiment. He kept an eye out for gadgets that might assist me in performing daily tasks. To this day, I am a keen user of the latest high-tech assistive devices.
Not that things were always great between us. Looking back, I see that Dad had a hard time accepting my disability. For a while, he went down a rabbit hole of pseudo-medical craziness in search of a cure. (There is none.) He took me to a spiritualist who promised to commune with the Other Side on my behalf. And we almost went to Europe for an experimental transplant of sheep cells, purported to help generate new motor neurons. (I still have his extensive notes on the project.)
Crazy, yes. But as a father now myself, I can only applaud his efforts. If he’ll never exactly be an advocate for disability pride, he has always been an advocate for me.
My mother was equally supportive, to be sure. But Dad’s insistence that things can and should be better became a transformative spark for me. It spurred me to keep striving, to prove the pessimists wrong.
Let’s face it: I’m a cripple who can’t scratch his own nose. Yet that was never going to define me.
Dad not only had confidence in my potential; he instilled in me a driving sense of ambition, a hunger to achieve. I credit this, in part, with helping propel me to graduate from Harvard (just like Dad), to move across country, to marry and have kids, and to write articles such as this one.
Many other disabled people I’ve met tell me their parents either discouraged them from trying to live a normal life, for fear of disappointment, or set unachievably high expectations. The results are as you might expect. I’m eternally grateful that my upbringing fell somewhere in between.