Amy Julia Becker is the author of Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny and What Every Woman Needs to Know About Prenatal Testing: Insights from a Mom who has Been There. A graduate of both Princeton University and Princeton Seminary, her essays have appeared in The New York Times, First Things, and The Christian Century.
Amy Julia’s blog at Patheos engages issues of faith, family, and disability, and is generating some vibrant—and sometimes heated—conversations among her readers. Here she talks about her experience as a mother of a child with disabilities and what that has taught her about how the Christian church can better love “the least of these.”
JM: Tell us a bit about your oldest daughter, Penny, and how she has inspired your writing.
AJB: Penny is seven years old. She is in first grade at our local public school. She goes to ballet class. She loves reading and writing. She struggles to understand math concepts. And she desperately wants to be able to conquer the monkey bars. Penny also has Down syndrome, which was diagnosed a few hours after she was born.
Penny’s diagnosis catapulted me into a disorienting place in which I questioned almost everything. When Penny was given the label “disabled,” I became the “mother of a disabled child.” I had inadvertently conflated identity and ability, so with this new label, I no longer knew who I was. In time, loving Penny for exactly who she is instead of who I once expected her to be transformed me. It’s not just that I began to see people with intellectual disabilities differently, but I began to see the entire world differently.
Penny’s birth changed my perspective on what it means to be created in the image of God, what it means to be broken creatures, what God’s idea of wholeness for us looks like, and what God’s redemption of our bodies might look like. Writing has always been the easiest way for me to grapple with my thoughts and emotions, so it was natural to write and write and write about all the new thoughts and feelings Penny’s birth provoked.
My memoir, A Good and Perfect Gift, is based upon hundreds of pages of journal entries from the first two years of her life. It’s the story of how I came to receive her as a gift.
JM: What have been the most difficult moments or conversations for you as a parent of a child with a disability?
AJB: I overanalyzed everything in the beginning, so I was easily hurt when people used “the r-word” in my presence or when they spoke assumptions out loud about what Penny would or wouldn’t be able to do in the future. One person commented that it was so nice we would never have sibling rivalry since Penny would always be so sweet. Many told me I was brave to get pregnant again.
The hardest moment probably came when I first began to read responses to a post I wrote for Motherlode, The New York Times’ parenting blog. I wrote about my decision to decline prenatal testing when I was pregnant with my third child even though I had an increased likelihood of having a child with Down syndrome. Although many readers responded with supportive words and similar stories, a substantial minority decried my choice. They thought I had a moral obligation—to my children and to society—to abort my baby if I found out she had Down syndrome. I knew those responses would come, but I didn’t anticipate how difficult it would be, emotionally, to realize how little value Penny has in the eyes of many people within our culture.
Since then, I’ve written extensively about prenatal testing and my decision not to pursue it when I was pregnant with Marilee. Although the response has never been quite so negative, I still receive plenty of comments from those who vehemently disagree with my views. I’ve learned to be grateful for the opportunity to write about Penny in venues where people don’t value her for who she is.
JM: How do you see the Church responding to people with disabilities and how can the Church improve?
In general, I think most churches have very kind postures toward people with disabilities. I think the motives are good. But I think the Church is lacking a theology of disability that enables real transformative and reciprocal work that benefits both people with disabilities and the Body of Christ as a whole.
In general, the Church tends to see people with disabilities as those in need. But people with disabilities are not only those in need. They are also those with particular gifts to offer. According to 1 Corinithians 12, every member of the Body of Christ is vital to the working of the whole. If we see people with disabilities as passive recipients of care rather than as participants in the work of the kingdom, then we fail to understand the radical nature of God’s work in the world.
JM: On your blog, you’ve welcomed a variety of voices to contribute. Which topics have generated the most vibrant conversations and why?
AJB: A few months ago, after the publication of my ebook about prenatal testing, I invited a handful of women to share their experience surrounding prenatal testing and Down syndrome. One woman wrote about why she was grateful for a prenatal diagnosis. Another wrote about regretting getting an amniocentesis. Yet another wrote about why she wished she had pursued prenatal testing as a means of prenatal care and preparation.
But the most controversial post came from an anonymous contributor. Her post was titled, “I Tested and I Terminated and I Do Not Regret.” Not only did her post sadden and anger some readers, but it also caused people to question why I gave any space to someone who aborted a fetus based upon a prenatal diagnosis of Down syndrome. Although I too was saddened by this woman’s choice, I felt it was important to offer her perspective in order to give a fuller picture of prenatal testing and Down syndrome. At least 50% of all babies with Down syndrome are aborted, and for women who have a prenatal diagnosis of Down syndrome, at least 75% choose abortion. As much as I hope my work will help women choose life for babies with Down syndrome, I wanted to be sure to represent this common perspective.
JM: You’ve written most recently on prenatal testing. What are some of the most common misperceptions about prenatal testing? What do you want more people to understand?
AJB: I wrote a piece for Ellen Seideman’s blog on Parents.com called “Four Myths of Prenatal Testing,” which included: Your doctor can tell you everything you need to know about prenatal testing; The best thing for every pregnant woman is to pursue prenatal screening; Prenatal testing is just a guise for selective abortion; and You can predict the type of child you will have.
I want more women to understand that they need to consider the implications of prenatal testing before they sit in their doctor’s office deciding whether to give consent for a blood draw. Prenatal testing offers information, but it often doesn’t offer answers. Moreover, the prenatal testing industry is currently biased in favor of selective abortion of fetuses with disabilities, and I want women to have access to more than a medical perspective on Down syndrome, other trisomies, and conditions such as spina bifida. Parents care about the quality of their children’s social and emotional lives at least as much as they care about their physical and intellectual abilities.
JM: A woman who has just received a prenatal diagnosis of Downs Syndrome from her doctor turns to you for counsel. What counsel would you give her?
I would want her to know that whatever she was feeling in response to the news is very normal. Fear, joy, love, guilt, grief, anger—all of these emotions might arise as a woman both celebrates the life within and considers the future with a child who might have challenges she never expected. I would also want her to know some practical facts about Down syndrome—that the life expectancy has more than doubled in the past few decades, that people with Down syndrome are more fully integrated into schools and workplaces than ever before, that people with Down syndrome report living happy and meaningful lives that are positive for their family members. And I would reassure her that the negative feelings will dissipate in time, but the love and joy and gratitude will remain.