“If everybody’s not a beauty, then nobody is.” – Andy Warhol.
When Laura Maffei was diagnosed with progressive Muscular Dystrophy as a young teen (the nerve disease that the Jerry Lewis telethon supports), she was told by her parents to hide her new condition, to mask the growing-in-strength symptoms – the encumbered gait, the inability to hold in her gut – for as long as she could because discrimination based on disability is one of the worst kinds of discrimination you can experience. And it is.
I can tell you from my own experience, from going from a healthy 14 year old blonde white girl to a very disabled-looking individual, you really see two vastly different life perspectives; and it’s heart-breaking. Some people will never like someone with a disability no matter how hard you try. It just won’t happen.
So when Laura Maffei, author of her just-finished memoir, How I Tried to Hide Muscular Dystrophy with Tight Jeans and Makeup (also known as Girl with a Secret. She’s currently looking for representation), was instructed by her parents to hide her condition (using control-top pantyhose, makeup, and a bag of excuses), I can’t actually say it was completely bad parenting. There were protecting her from negative life experiences for as long as they could. I can’t say I blame them. But Maffei knew there were other reasons her parents wanted her to hide it, the main reason chiefly being: Their over-concern with physical appearances.
“My mom always told us to hold in our stomachs and, from when we were 13, to wear makeup outside the house.” (And after being diagnosed) “I‘d even not eat or drink anything on days I was going to the beach with friends, to lying to my gym teachers about how many situps I did, to refusing to tell even close friends why I was walking with a labored gait in college.” “All that hiding is exhausting,” she says. “And even though my story is a specific one, I think women of all physical abilities feel compelled to hide or change things about their physical selves, things of which they needn’t be ashamed, but they are because our culture tells us to be.”
Laura eventually came “out” of the disability closet, and now gives speeches on her journey of self-discovery, in addition to writing memoir. Also, stop by her blog, Everybody’s a Beauty, where she’s compiling a collection of user-submitted experiences on disability and beauty, and the struggle that can come with that, which needless to say has become a topic close to her heart. Add yours here!
