on raising a rare girl
Reader, it’s my great privilege to present my guest today, powerful writer and fellow MoFaCa Heather Kirn Lanier. She is the author of the memoir, Raising a Rare Girl, a New York Times Book Review Editors’ Choice, along with two award-winning poetry chapbooks and a third forthcoming from Seven Kitchens Press. Her TED Talk, “‘Good’ and ‘Bad’ are Incomplete Stories We Tell Ourselves,” has been viewed nearly three million times.
The following excerpt is from a longer essay titled “Out There I Have to Smile.”
Please also read the “asterixed” note at the bottom! And when you’re finished with all of it, please go buy her book and read it, google her name and read everything she’s written and listen to her TED talk. She is the real thing, a force of nature, a beautiful, beautiful human being.
For bodies that don’t fit into a certain mold, for bodies we call disabled, out there can be a treacherous space. Out there has steps where you need a ramp. Out there has strobe lighting that could make you seize. Out there writes stories over your body (she’s sad, broken, wrong) when you just need toilet paper.
For parents of kids with disabled bodies, out there can be exhausting. It maintains chipper myths about babies that your child breaks. What’s with that feeding tube? It tosses questions at your feet like it’s throwing you something between flowers and rotten fruit. Why’s she so small? What happened? What’s wrong? You answer with a smile, or you answer with fatigue, or you turn your head because none of your business.
Out there is risky. Your son might sit in a classroom led by a teacher who doesn’t believe he can learn. Or your daughter might need medical care from a doctor who thinks she’s a tragedy.
Out there is inconvenient. The doorway isn’t wide enough for your adaptive stroller. The wood chips of the town’s only playground are terrible for wheelchairs. The librarian concludes public story time with a craft that requires scissors, and you must now serve as your child’s occupational therapist, back hunched, palms sweaty, enabling the arduous work of cutting paper.
Out there is not exactly designed for your kind.
As a white, straight, cisgender, non-disabled woman, I must imagine how this sentiment holds true for other bodies. My experience as a caregiver to a kid with disabilities* has put me in the closest relationship to this truth. Out there is not designed for many.
Which is why in here spaces are so delightful. And it’s why, especially in early parenting, I often lingered in them for longer than I needed. Idling in the bathroom. Struggling to leave the house. In here applies little pressure. In here asks no questions. In here often lets you and your kin be as you are.
* I use both person-first and identity-first language in this essay. As a nondisabled person, I don’t have a right to claim an identity for someone, so I err on the side of identity-first language until I know a person’s preference — and my daughter hasn’t indicated one. I also use identity-first language to stand with disability activists who argue that linguistic acrobatics to avoid the word “disabled” are a manifestation of our culture’s ableism. We do not say, for instance, “I am a person with femaleness.” #saytheword
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