Recently, I read a story about a mother named Emily Rapp, who I would venture to say, feels the same way as I do. Her story is a mother’s worst nightmare to be sure, but it speaks to the truth of life. There is no “one size fits all” answer when it comes to this issue. And when all is said and done, it is not which group we affiliate ourselves with that matters most: it’s if we lived with love and in our own personal truth.
Emily’s story began long before she was a mother. She was born with a congenital birth defect that required her left foot be amputated when she was only four years old. In the 1970’s she became a poster child for the March of Dimes. Her first book Poster Child, chronicles her life as an amputee. Her second book, The Still Point of the Turning World, details her life with her son, Ronan, after he was diagnosed with Tay-Sachs disease at nine months of age.
Emily and her husband, Rick, lost their not even three year old son in February 2013 to this disease, typically fatal in infants. In early 2012, prior to Ronan’s death, she spoke out in response to a statement made by Senator Rick Santorum that prenatal testing increases the rate of abortion.
In a bold and surprising essay responding to Santorum’s assertion, Emily was very clear. She wrote:
“That it is possible to hold this paradox as part of my daily reality points to the reductive and narrow-minded nature of Rick Santorum's assertions that prenatal testing increases the number of abortions (a this equals that equation), and for this reason, the moral viability or inherent value of these tests should be questioned. Prenatal testing provides information, a value-less act. I maintain that it is a woman’s right to choose what to do with the information that attaches value and meaning, and that this choice is—and must be—directly related to that individual’s experiences. What’s at stake here is not the issue of testing, but the issue of choice. I love Ronan, and I believe it would have been an act of love to abort him, knowing that his life would be primarily one of intense suffering, knowing that his neurologically devastated brain made true quality of life—relationships, thoughts, pleasant physical experiences—impossible.”
Emily’s situation is extraordinary, to be sure, but her comment, that it would have been an act of love to abort him, resonates deeply with me. Most people have this belief that life as we know it is all there is. How can any of us know another’s journey, another’s pain, another’s suffering? How can we say for certain what is categorically right for another person? And how can any of us even begin to know the big picture of the workings of the Universe?
It is clear that Emily does not resonate with the pro-life movement, although in my estimation, she probably values life more than the next person. The irony of her being a person with a disability is not lost on me, but in fact only enhances her much nuanced circumstances.
Yet I wonder how much resonance Emily has with the pro-choice movement. While it is clear she believes in a woman’s right to choose, it is also clear that she understands there would have been another kind of agony had she chosen to do so. That to make the choice to abort, regardless of the facts and circumstances, is often complicated and generally not without pain.
Her story is horrific, brave, and honest. It is her personal truth and I am in awe of the courage it takes for her to stand in that truth. We each have our own story, unique and particular to us as is every hair on our heads. How can we possibly ever really know what another’s truth is?
We simply don’t.
Namaste.
