My friend Amy Julia Becker has an excellent new e-book out called What Every Woman Needs to Know About Prenatal Testing: Insight from a Mom Who Has Been There.
Amy Julia writes that her aim was “to write a nonjudgmental book to provide women and their partners with a way to think about prenatal testing before being offered it,” and, as unlikely as it may seem, I think she’s accomplished that, but she also acknowledges that she has a “very particular bias”:
“At the end of the day, I hope that many women will choose to continue their pregnancies even in the face of disabilities. I also hope that our culture will become one in which making that choice is more and more possible, with protection for families with children who have disabilities, including greater social supports, educational options, and health care provisions.”
What Every Woman Needs to Know About Prenatal Testing deserves to be read widely and carefully for many reasons, not least because Amy Julia insists that families facing troubling prenatal diagnoses need opportunities to connect with other families already living with children with those conditions–in other words, she points out the biases of medicine’s clinical context (ie. “here’s the test result and here’s what this means medically”) and the need for women and families to have support in a social (or whole-life) context (ie., “why don’t you meet our daughter who has Down syndrome and see what our life is like?”
“Most medical school training comes in the context of hospitals, and as a result many doctors have experienced children and families with disabilities only in the midst of the stress and pain associated with hospital stays. Furthermore, doctors, by the very nature of their career, have devoted much time and energy to intellectual pursuits. For many physicians without personal relationships with people with intellectual disabilities in particular, the prospect of a below-average IQ constitutes suffering in and of itself.”
One of my favorite things about this book is how (as in the above quotation) Amy Julia shows the limits of certain kinds of knowledge. Her prenatal tests all-but-definitively told her that her daughter would not be born with Down syndrome–and she was. Yet even as she struggled with fear and anger when Penny was diagnosed with Down syndrome at birth, she notes, “even in those early hours in the hospital, my anger and fear dissipated when I held Penny in my arms. The abstract concept of a negative diagnosis made way for the positive reality of a baby with round cheeks and an upturned nose, heart-shaped lips and big blue eyes.”
In my own new book, Eat With Joy, I tell about a time when my family was invited to lunch at the home of some church members with intellectual and physical disabilities–aka, a “group home”:
As the only daughter of a pastor, I’d been to
a lot of boring, “let’s impress the Reverend with our piety” kinds
of dinners. This meal was anything but boring. Seeing adults who
needed help cutting and eating their food and even, in some cases,
who needed bibs was fascinating, if slightly uncomfortable for a
twelve-year-old. But mostly I remember a lot of laughter and so
much happiness that we had come over. [...] I can’t remember another meal where the
hosts were so overjoyed at our mere presence.
This comes in the context of discussing radically equal table fellowship as an essential characteristic of early Christian communities, the vestiges of which we see today in the form soup kitchens and food pantries. Sharing food with the hungry is still important to Christians, but
It is the rare group that—like the L’Arche communities
founded by Jean Vanier—regularly practices sharing
meals across the boundaries of social class, background and, in
L’Arche homes, intellectual capability. It’s precisely this kind of
sharing [this knowing-in-context!] that comes closest to Jesus’ ideal.
The vision of a joyful table where all sorts of people are welcome to feast and to fellowship and to flourish is the picture I have of the kingdom of God. It’s a picture that’s hard (maybe hardest!) to see on ultrasound screens or karyotypes, as Amy Julia so graciously (and, yes, nonjudgmentally, truly!) points out. If you are looking for this kind of hopeful picture, or facing frightening prenatal diagnoses, or wondering what questions to ask “before sticking out your arm” for a prenatal test, I urge you to check out Amy Julia’s new book (and for that matter, her older one, too!)
To enter yourself in a giveaway for a free copy of Amy Julia’s new book, please leave a comment (being sure to use your real email address.) Next week, I’ll pick a comment at random, and email the winner a digital copy of the book right away.