Body Language proudly presents July’s guest writer, Laura Maffei. She is the author of the poetry collection Drops from Her Umbrella (Inkling Press 2006) and founder of the journal American Tanka. Her current project is a memoir called Girl with a Secret, or How I Tried to Hide Muscular Dystrophy with Tight Jeans and Makeup and she blogs about issues of appearance at lauramaffei.com.
When I was twelve years old, in 1980, I was diagnosed with muscular dystrophy. There weren’t really any visible symptoms yet, but the disease was progressive and eventually there would be. During the car ride home, my mother turned to me in the back seat and said, pointedly, “We’ll only be telling Aunt Nancy and Uncle Joe.” These were our closest relatives. What she meant was, we would not be telling anyone else. She was telling me to keep it a secret.
My parents made this decision mostly out of protection. This was, after all, long before the Americans with Disabilities Act, and they didn’t want me unnecessarily labeled at school. But there was another side to it. My family cared deeply about appearances, my mother in particular. None of us, my father included, were allowed out of the house for any reason without being freshly washed and combed, wearing freshly ironed and color-coordinated outfits. We were also expected to look dignified and graceful at all times.
There was one other layer. I was a girl. I think a boy would have been told to keep it a secret too, for general appearances’ sake and to avoid discrimination, but a boy, you see, could win his mate with his earning power, if he worked diligently enough. Which he would be expected to do (both work hard and find a mate), since we were a traditional and conservative Italian-American family with one foot still in the 1950s. When I was born in 1967, aunts, uncles, and grandparents all placed bets on what age I would be when I got married. The bets ranged between 19 and 24, with one uncle betting “never” because I’d be a career woman. One could not be both, because then how could you cook or clean for your husband and children? And yet one was definitely expected to marry.
And marrying required being attractive. While I was encouraged to study hard and go to college, it was always made clear to me that being attractive was essential, and that “attractive” meant very specific things: A slim figure with a flat stomach. A face covered in foundation, blush, eye shadow, and mascara. (From the age of 13 I was encouraged to wear makeup every day.) Certainly not a disease that would cause my lower stomach to protrude from weakened abdominal muscles and cause me to walk with a labored gait that made people glance at me when I went by.
I had to hide it as best I could, and for a while I found various ways, like super-control-top hosiery and lying to the gym teacher about how many sit-ups I did. I refused to answer questions about it, especially from men I dated. Because yes, insanely, I kept trying to hide having muscular dystrophy well into adulthood, long after it became ludicrous to try to hide the obvious fact that I had a disability, that my body wasn’t the perfect one I thought I had to have in order to be acceptable.
Which is why, even though my story is specific and a little bizarre, I see it everywhere. It’s the same old story, really: girls and women trying to conform to what the culture tells them is physically acceptable, and feeling shame if they don’t. I see it when a friend won’t take her cover-up off at the beach in 95 degrees. I see it when the students I teach totter across the stage during an awards ceremony in stilettos that are hurting them (and, in one case, fall down the stairs). I see it when a woman in a mirror in a public bathroom experimentally pulls her skin back tight from her face.
What is the solution? For me, two things helped somewhat: learning how to draw, and hanging out with a group of smart, funny, earth-worshipping Wiccans while I was in my twenties. The Wiccans showed me that everyone, EVERYONE, was perfectly acceptable whatever their face or body type. Drawing, with its requirement of intently caressing with the eyes every shape and shadow of a person’s face and figure, showed me that everyone is beautiful.
Not that I don’t still cringe at times, when I see myself unexpectedly reflected in a store window and I don’t conform to the image I was brought up to believe was the only one that was acceptable. We all have to keep finding our way, slowly, out of the morass of arbitrary decrees that tell us what we’re supposed to look like, and what we’re supposed to hide.