Imagine, the day is warm. Bright shafts of light filter through the branches of the large black walnut in the heart of the backyard. A distant lawnmower whirrs and the smell of freshly cut grass fills the air. A young mother sits on a picnic blanket with a wispy-haired toddler in her lap. The cherubic toddler pulls board books from a ladybug backpack placed in front of her. Satisfied to find her favourite Clifford book, the toddler settles in against her mother’s growing abdomen, as the mother fights back tears. With the toddler’s feathery head tucked under the mother’s chin, the mother holds her daughter tight as a tear escapes, and she thinks of the child on the way: will it be like this again?
That mother was me, and the baby inside me was soon to be born with Down syndrome. What I really wanted to know, in that moment, was: will I love her the same?
Soon after my second daughter’s birth in hospital, I was handed a form with a checkbox beside the word “disabled.” The hospital staff wanted me to check that box. I asked myself, but is she disabled? Aren’t all babies dependent on their mothers? Elyse’s soft skin, the way her pinky finger curled around mine; the milky scent of her fontanelle; she was everything a baby should be. The images I held in my head about disability contrasted with the beautiful baby in front of me.
And it was these discordant feelings inside me, this emerging realization of my own internalized ableism—the belief that an abled body is better—and my love for my daughter that led me to want to explore these ideas on the page.
In looking past problematic dichotomies of “good” and “bad,” I no longer view disability as a “bad” thing, but rather as part of the human condition.
While my journey to confronting my own ableism is at the heart of I Don’t Do Disability and Other Lies I’ve Told Myself, there’s more to my story than that. Stereotypes about individuals with Down syndrome and those who parent them are rife in our society. I wanted to offer a counter-cultural view; I am more than a mother to a daughter with Down syndrome: I’m a wife, and a mother to two other girls, a woman, a writer, a friend, and a naturalist. I wanted to write freely about my desires in a way that other women might also relate.
I also write about sex in the same book where I talk about Down syndrome because these topics, put together, remain taboo; and yet, sexuality is part of our human experience.
“Why are we reading?” Annie Dillard wrote, “if not in hope of beauty laid bare?” I ultimately wrote this book to make myself and my daughter seen, and to show the beauty I have found in disability parenting.
Adelle Purdham is a writer, educator, and parent disability advocate. She holds an MFA in Creative Nonfiction from the University of King’s College and teaches creative writing at Trent University. Adelle lives with her family in her hometown of Nogojiwanong (Peterborough), Ontario. Learn more here.