Non-fiction books usually don't grab me the way fiction does. When I start one, it's not unusual for me to put the book down for weeks before I pick it up again. But there are exceptions, and "No Easy Choice: A Story of Disability, Parenthood, and Faith in an Age of Advanced Reproduction" is one of them.
I read it in a matter of days, and I was sorry when the book ended, so caught up was I in Ellen Painter Dollar's morally complex struggle to determine whether her Christian values were compatible with using advanced reproductive technology to prevent a disabling disease in her children.
Dollar, who grew up and lives in West Hartford, was born with osteogenesis imperfecta (OI), more commonly called "brittle-bone disease." Those who have the disease break bones painfully and frequently, and suffer from loose joints, scoliosis, and muscle weakness, among other things.
Since the disease is caused by a dominant mutation, any children Dollar had would have a 50-50 chance of having it as well. But using reproductive technology to test an embryo for the disease and selectively implanting those that didn't have it required finding the genetic mutation that caused Dollar's OI. When the mutation initially couldn't be found, she and her husband conceived on their own and had their first child, Leah, who has OI as well.
That led Dollar to a painful choice: Risk having another baby with OI or try again to locate the genetic mutation and pursue an expensive IVF procedure. I won't give away her ultimate choices, but Dollar did have two more children, both without OI.
Along the way, Dollar met with scholars and ministers and read as much as she could to find out what her church and her strong Christian faith had to say about the use of advanced reproductive technologies, but she found the guidance lacking. The extremes — either it's all wrong or none of it is wrong — were out there, but she craved a more nuanced view and more discussion about the implications of her family's choices.
"My goal was to get people to think and converse," Dollar said in an interview earlier this month.
In "No Easy Choice," Dollar writes about the difficulties that arise when technology races ahead of society's ability to understand and confront the moral implications of it.
"The tricky part, for me at least, is to figure out when medical cures should be welcomed and when medicine goes too far in altering the human condition. Using [advanced reproductive technology] with the goal of eliminating OI in a family can be perceived simply as good medicine," she writes.
"It can also be perceived as a vain attempt to fix things that are ultimately unfixable, and that perhaps should not be fixed — the limitations that can reveal what is most valuable in life."
Dollar — who in addition to raising her three children writes a blog about parenting, disability and ethics — frankly discusses her own challenges in growing up with a disease that both shaped her passionately held views yet limited her in many ways. She also writes movingly about the vocation of motherhood she had felt since she was a child.
"Today the consequence of offering my body to my children — as their incubator, transporter, comforter — is sore knees at bedtime. Later, who knows what the consequences will be — more fractures? A wheelchair? I will certainly pay a price in lameness for having offered this body to my children; but in bearing and rearing children, my body has done exactly what I wanted and needed it to do, for the first time in my life."
Dollar said the reaction to the book has been "very positive."
"I was afraid that people were going to peg me as wishy-washy," she said, because she doesn't conclude that any particular way of thinking is the "right" way.
Dollar's arguments, challenges and fears are expressed beautifully, honestly, and without judgment for those who might make a different decision. "No Easy Choice" would make an excellent discussion book for book clubs and groups of all faith traditions. You can find out more about Dollar's book on her website.