As Amy Julia Becker so eloquently wrote in her review of my book last week, and as I further explained in the comments section of that review, considering the ethical questions raised by reproductive technology in the context of real people’s stories is hard but important work. Stories illuminate, and they complicate. As I said in a comment to Amy Julia’s review:
The young adult novelist Gary Schmidt, in his keynote address at the recent Festival of Faith and Writing, held up us storytellers as having a primary role as questioners. Among other things, he said, “Stories are not about having the right answers, but asking the right questions,” and “Stories that provide easy answers are often lies.” He articulated well my own philosophy of storytelling, which informed this book. A radio show host interviewing me recently labeled what I do as “educational storytelling,” which I thought was right on target.
In this post from last week about prenatal testing, I suggested that sharing and pondering people’s stories is also a good way for people and communities to begin talking about ethical concerns with reproductive technology, and what limits might be necessary. Of course, I offer my book No Easy Choice for that purpose. But as promised, I also wanted to share some other resources for pondering people’s stories. Here, in no particular order, are some of my favorite resources:
Expecting Adam by Martha Beck – In a way, this is the book that started it all—my own journey to write about reproductive decision-making. My friend Hope (whose husband was our pastor at the time) gave me a copy during my first pregnancy, when we didn’t yet know that Leah would have OI. Reading it awoke the little voice in my head that said perhaps I should add my own story to the cultural conversation about babies, technology, disability, and choice . Beck, a Harvard academic who has since become a self-help guru beloved by Oprah, discovered during her second pregnancy that her child had Down syndrome. She and her husband bucked the prevailing wisdom of their pragmatic, scientifically oriented culture—many Harvard colleagues just assumed they would abort—in carrying the baby to term. During her pregnancy, Beck had a number of spiritual, even paranormal experiences, including being visited by angels. While not explicitly Christian, this engaging book highlights the difference between how modern culture views disability vs. how a spiritual ethic grounded in love and acceptance does.
A Good and Perfect Gift by Amy Julia Becker – This is my friend and colleague Amy Julia’s chronicle of the first two years of life with her daughter, who was diagnosed with Down syndrome shortly after birth. She explores her expectations for her child, and the journey from disappointment and grief to celebration of Penny as the person—and gift—she is. Read my review here.Carrier by Bonnie J. Rough – Rough’s memoir is an engaging story in which she writes not only in her own voice, but also in the voices of her mother and her grandfather (and does so quite effectively). Rough’s grandfather and brother both inherited a genetic disorder affecting connective tissues such as skin and teeth. Weaving three stories together, Rough explores her and her husband’s own reproductive decisions, as her sons would also be susceptible to the disorder. Read my review here.
Everything Conceivable by Liza Mundy – Unlike the other books listed here, this is not a memoir, but is rather a journalistic exploration of reproductive technology, and the people who are involved in developing, marketing, and using it. This is the resource I turn to for essential background information on reproductive technology—how techniques were developed and how they work, government regulations (or lack thereof), statistics on success rates and usage, etc. Besides being educational, it’s just a good read.
Saving Henry by Laurie Strongin – Strongin wrote this memoir about her son, Henry, who died of a genetic blood disorder called Fanconi anemia when he was seven years old. Strongin and her husband went through preimplantation genetic diagnosis (PGD) nine times, without success, in an attempt to conceive a sibling for Henry who would be both free of Fanconi anemia, and also a good donor match for Henry, so that the sibling’s umbilical cord stem cells could provide him with a life-saving bone marrow transplant. I wrote a post about this book here.
My “Stories That Matter” Series – On my former blog, Choices That Matter, I published a series of posts written by or about women who have made complex or difficult reproductive decisions, related to prenatal diagnosis, unplanned pregnancy, and family history of genetic disease. If you click on the link above, it will take you to all of the posts tagged with “Stories That Matter.” For most of the stories, I also wrote some comments and reactions.