“When you push away disability, you also push away your humanity. When you push away any fissure of vulnerability, you also push away the tender truth about yourself. You are not, were never made to be, SuperHuman. You were made to be human. And this doesn’t exactly break the heart, but it does split apart every clapboard and nail and piece of barbed wire you’ve hammered to it.”
—Heather Lanier, Raising a Rare Girl
Raising a Rare Girl
So first of all, Heather Lanier’s new memoir, Raising a Rare Girl, is as excellent as this quotation suggests. She’s writing about her experience becoming a mother and discovering that her daughter Fiona has a rare genetic condition that involves less genetic material on the fourth chromosome than typical kids have. She’s a beautiful writer, and this book is relevant to everyone who is wondering how to carry our real fragile selves into a scary and broken world.
Second of all, I resonate so much with this particular statement. It is easy for able-bodied and able-minded people to push away disability. To ignore or not even encounter people with disabilities in everyday life. And when we live only within the homogeneity of the typical, we miss out.
We miss out on the beauty, goodness, and diversity of atypical bodies and minds, sure.
We also miss out on our own capacity to give and receive love. We miss out on a fundamental truth about who we are—beloved, first and foremost, before we’ve proved ourselves in any way, before we’ve done anything great, before we’ve tried and failed or tried and succeeded.
Draw Near to Disability
I think the inverse of Lanier’s statement is also true. When we draw near to disability (in ourselves and others), we draw near to our humanity.
Learn more with Amy Julia:
- In Her Own Words: Penny’s Advice to a Student Beginning Ninth Grade
- Ableism: 3 Reasons Why I Don’t Use That Term
- Learning Science as a Teen in High School With an Intellectual Disability
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