It didn't help that we had responded to Penny's diagnosis so differently. Two days after our return from the hospital, Peter finished grieving and he walked outside and never looked back. Penny was his beautiful daughter, and that was that. I trusted him -- he had immersed himself in grief and had emerged ready to receive our daughter. He didn't worry about her future. He didn't wrestle with the theological questions surrounding Down syndrome. He just loved her.
I wasn't there yet. I felt too fragile….
-- From A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny, by Amy Julia Becker
It was in a forum on Nov. 19 of last year. For seven minutes and 38 seconds, Rick Santorum spoke about the health struggles of his daughter Bella, and his response thereto. The most stunning line was this, after saying that for the first five months of her life he had tried to be "the rock" for his family, the one who didn't break down and show too much sorrow or grief. But he wasn't really a rock, he said:
"It was a lie. I decided to not love her like I did because it wouldn't hurt as much if I lost her…. I had seen her as less of a person because of her disability." But then, he realized as he held her little finger after she had been resuscitated from a situation where she had completely stopped breathing, he realized his pose was a façade: He loved her fiercely, desperately.
One cannot watch that video and not like Rick Santorum. Similarly, the 3:38 video on Bella on his campaign website is too raw, too honest, to have been scripted, and it is quite moving and inspirational.
"Bella makes us better," he said. "Some people describe people like Bella as 'disabled children,' and I look at her and I look at the joy and the simplicity and the love that she emits, and it's clear to me that we're the disabled ones, not her; she's got it right. She's got a great and beautiful spirit -- one that emits unconditional love, and we can learn a lot from that."
While Santorum was still campaigning for president, it didn't seem appropriate to write much about his special-needs daughter, for fear it would look like making her a campaign issue. But as he spoke at appropriate times and places about her, it was striking to see how often he said things very similar to what Amy Julia Becker wrote in A Good and Perfect Gift, quoted above. Becker's daughter Penny has Down syndrome, or Trisomy 21, which involves an extra 21st chromosome; Bella Santorum has Trisomy 18, also known as Edwards Syndrome, which involves extra material on the 18th chromosome. The two ailments are similar, except that Trisomy 18 is associated with more severe, indeed more life-threatening, medical complications.
Becker's book is a remarkably candid, wonderfully moving memoir of events during the first two years of Penny's life. It carries no political agenda, so it merits a light touch when its material is used in the context of a political candidate such as Santorum -- but the points to be made here are not political at all, but rather cultural and humane.
Pre-echoing Santorum's comment about Bella making us better and offering a gift rather than being a burden, Becker wrote (in a letter to her daughter): "When you were first born, I was worried, I didn't know much about Down syndrome, and I was afraid. I'm not worried anymore. I am proud of you -- our smart, funny, beautiful, delightful daughter. Thank you for being in our lives."
What is striking is how often even the most well-meaning of Becker's acquaintances say things about Penny that made Penny sound like a terrible burden rather than a joy. Especially frustrating were the times medical professionals seemed to assume that a baby with Down would be a baby not worth having. They also, rather insistently, pressured Becker to have various forms of pre-natal testing when she again became pregnant. Becker's observations tracked closely with what Santorum said in a famously contentious interview with the clueless Bob Schieffer on Face the Nation.
Here's what Santorum said: "We're talking about specifically prenatal testing and specifically amniocentesis, which is a… procedure that creates a risk of miscarriage when you have it and is done for the purpose of identifying maladies of a child in the womb, which in many cases, in fact, most cases, physicians recommend, particularly if there's a problem, recommend abortion."
Here are extended passages from Becker's lovely book:
I turned on NPR as I drove home, and the story was about a new ethics recommendation from the American College of Obstetricians and Gynecologists ("ACOG"). It stated that doctors unwilling to provide abortions had an obligation to refer their patients to another physician who would provide the procedure. In the words of the spokesperson on NPR, "If a physician has a personal belief that deviates from evidence-based standards of care… they have a duty to refer patients in a timely fashion if they do not feel comfortable providing a given service." I thought about all the women who were offered prenatal tests to screen for Down syndrome. And I had to wonder how much those tests were really offered care for those women, for those babies. I knew that new medical guidelines -- evidence-based standards of care -- suggested that all pregnant women, regardless of age, be screened for Trisomy 21. And I knew that studies showed that women who received a prenatal diagnosis of Trisomy 21 terminated their pregnancies the vast majority of the time. Evidence-based standards of care resulted, more often than not, in the elimination of people like Penny from our society. I felt the anger surge. The report came across as so factual, so neutral. But I knew from talking to friends who had children with Down syndrome that the information about that extra chromosome was rarely delivered in a neutral manner….
ACOG had pitted "personal beliefs" against evidence, as if a physician who was unwilling to perform an abortion had defied the evidence about how to care for this woman, this child…. "Evidence-based standards of care" included all the physical problems Penny could face, but not the joy she could bring or the abilities she might have…. "Evidence-based standards of care" didn't include the reality that all of life is fragile and uncertain, with potential for heartbreak and potential for great delight.
Before the actual text of the book, the publisher printed a series of questions and answers with Becker. One was about pre-natal testing. Here's what Becker answered:
Although I was shocked when we discovered Penny had Down syndrome, I was grateful we hadn't known in utero. We had been able to prepare for our child, not for a diagnosis. In addition, we were wary of participating in the prenatal screening industry. Although many individual women use prenatal screening as a way to prepare for the birth of their child, the industry as a whole perpetuates bias against children with disabilities. I didn't want to participate in a cultural assumption that certain children are more "worthy" of life than others.
If I had the power to change anything, it would be to change the way people perceive individuals with Down syndrome. I'd change media outlets that report on people "suffering" from Down syndrome. I'd change celebrities who use the word "retarded" as a joke. I'd change doctors who think of Down syndrome as a condition that makes life not worth living. I'd change our culture to make it more welcoming. But I wouldn't change Penny.
At its heart, this is not about politics. It's about families, and human decency, and human potential, and the preciousness of human life. As Santorum said of the choice his family faced when Bella was born, "We're gonna not focus on her dying; we're going to focus on her living. And she's been a wonderful, joyful, center of the universe, if you will, for our family for the past three years."
And here is Amy Julia Becker: "Every day I become more and more clear that Penny is not a 'Downs kid.' Penny is a child with wonderful and fascinating aspects to her personality. Penny is a child who knows and loves her family, who has a big vocabulary and loves books, who blows kisses to anyone who says hello, who is learning to climb stairs, and, oh, yes, Penny is also a child who has Down syndrome."
This is what is missing from so much cultural commentary today -- not just about children born with maladies, but in so many aspects of life -- what is missing from the way so many of us look at the world: What is missing is the sense of individuals as individuals, not as part of some larger group category. We, or the cultural elites, make assumptions about people based on absurdly broad categories -- stay-at-home moms as "not working"; Evangelicals as mindless "Bible thumpers"; black people as victims needing a handout; southerners as uneducated; middle Americans as "clinging to God and guns"; or (to explode a conservative prejudice against East Coasters) Wall Street denizens as effete, brie-eating snobs -- that we fail to even harbor the slightest notion that they, we, all of us have individual thoughts, individual dreams, individual strengths, and individual worth.
We have individual worth as human beings. We have individual worth as children of other men and women who themselves are individuals. We have individual worth, mostly, as children of God.
That status, alone, is a good and perfect gift.