Here's my sales pitch for this one: Raising Henry reminds me of Life As We Know It. That's a compliment for each book. Bérubé's book was published in 1996, so it's been a foundational piece of writing for a lot of parents who have children with Down syndrome. Seventeen years later, Rachel Adams' book is set to offer the same kind of thoughtful reframing of what being the parent of a child with Down syndrome means (and it's no surprise that the books remind me of one another--Rachel* identifies Life as We Know It as her "road map" when her son Henry was born).
I loved reading this book in part because Rachel's thinking is so familiar to me. She's an academic who's bridging her work in disability studies and her experiences as a mother to a child with Down syndrome. She's attentive to the rhetoric we use and what it means. She's grappling with the big questions of how we understand and engage with disability: is it something we try to eradicate? To ameliorate? To embrace? And she addresses these big questions while also sharing the day to day experiences of her first three years as mother to Henry. As she tells her stories of feeding Henry, making cakes, scheduling appointments, she regularly says, "And what about this? Think about these larger implications. How do we make sense of this?"
My kind of book. I have highlighted so much of the book, in fact, that it's difficult for me to know what to share here. I have written, "Me, too!" or "Yes!" in the margins several times. Examples:
- She critiques pregnancy books that characterize "the likelihood of conceiving a fetus with Down syndrome as a 'risk,' a word that implies a danger to be avoided." As I'm writing this, I'm looking at a notepad on my desk where I've written the number of times the obstetrician who presented before me at the genetics conference used the word "risk" in this exact way.
- She addresses the new non-invasive prenatal tests that are being developed, and she asks, "But how do we decide what counts as health and what constitutes a disease?" Yes, yes, yes! Exactly the right question!
- And a less academic "Me, too": she shares, "I became a Down syndrome stalker. If I glimpsed a person with Down syndrome on the street, I would follow her with my eyes, wondering what she was capable of, what she liked doing, whether she had a happy life." As I think I've talked about before, I'll do this and sort of hold Maybelle up, hoping that the person with Down syndrome will notice her and think, "Oh, good, a member of my community!" so that we can talk.
Because this is a book addressing life with a child with Down syndrome, it's a book about Rachel and not simply a book about Henry. She shares her own anxieties--both about Henry and about herself. Her life as a mother to Henry is, of course, tied up with her own experiences as a daughter, and because her mother died when she was young, she's sort of having to create the motherhood experience from scratch. In addition, she's a professor--at Columbia, no less--so her professional world centers on intelligence, articulation of complex ideas. She writes, "We were a family whose lives revolved around words. The ability to communicate was essential to my career and my sense of self." What does it mean, in this context, to have a child with an intellectual disability? What does it mean to passionately love and value someone who challenges much of what you've assumed to be true, and so much of how you've operated in the world?
Rachel makes a statement toward the end that could be the thesis statement of the book I'm working on right now. She's recounting a conversation with a woman who's considering cosmetic surgery on her child, to make the child look less like a person with Down syndrome. The woman asks Rachel, "What's wrong with that?" Rachel says,
"What's wrong with it is that Down syndrome isn't a disease that needs to be cured. The problem is with the world, not our kids. It doesn't help to try to pass them off as something they aren't. I want to change the way other people think. I want to change the world."I want to change the world. YES! This book is one way she's doing that.
She writes, "We live in a world where a baby like Henry demands a story." And she's written that story. Go get this book. Then come talk to me--we will have a great conversation.
*I'm allowed to call her Rachel because now we're email friends. Any students who are reading this: you are never allowed to call an author by the first name unless you're actually friends! Email friends counts.