Imagine this: You and your spouse are expecting your first child. You feel the baby kick. You paint a nursery and pick out a crib that converts to a big kid's bed. In the mornings, you worry about building up a college fund and in the evenings, you dream that your child will be an architect or the next George Clooney or an Olympic skier. You buy Goodnight Moon and a soft blanket.
Then there's pain and nurses and doctors poking and prodding and out slips a baby, and because you're young and no one thought it could happen to you, you can't believe it when you learn your child is disabled.
What would you do?
That's the premise of Amy Julia Becker's new memoir, "A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny." The book opens when Becker, who wed her high-school-sweetheart-turned-elite-boarding-schoolteacher, gives birth to their first child, Penny, and she learns the baby has Down Syndrome. At the time of Penny's delivery, it wasn't routine to test younger pregnant women to see if they were carrying a Down Syndrome baby, since the risk was higher in older mothers. So while many parents of Down Syndrome children know in advance that their child will be disabled, Amy Julia and her husband Peter did not.
As a woman who founded her identity upon her intellect, Becker struggles with the idea that her daughter might not intellectually succeed the way she did, that she might not be admitted to the prestigious boarding school where her husband teaches. She also struggles with the physical problems Penny faces -- low muscle tone, eye problems, a higher risk of leukemia and shortened life expectancy. She fears how her family, friends and the public will react to her daughter: Will people be able to love this child who is so different from them?
And as a woman of faith, she wonders what the purpose of disability is and where she and her family will find grace.
As she writes in a way that both educates and challenges the reader, we begin to wonder how to comprehend the meaning of disabilities as well. From a Christian perspective, where God is assumed to be all-knowing, all-powerful, and all-good, what purpose does a disability like Down Syndrome serve? What is learned by having a disability -- or knowing someone with a disability -- that couldn't be learned by other means? Or, put in Becker's own language, "In a God-created universe, what was good and not good in her [Penny]? And was it any different from that which was good and not good in the rest of us?" (97)
As I finished the book, this was the question with which I as a reader was left pondering, but there was also a word Becker used throughout the book that became the focus of my reflections: vulnerability. She writes:
"Clinical words flitted through my mind: chromosomal abnormality, mental retardation, disabled. And the politically correct ones: special needs, intellectually challenged. I still didn't know how to describe her in a way that didn't ignore or minimize her extra chromosome but that also didn't define her entirely in negative terms... One word I did like was vulnerable. Penny was vulnerable -- physically, mentally, even socially and emotionally." (144-5)
Because children with Down Syndrome have mental and physical difficulties that often preclude them from the same level of independence available to others, vulnerable felt like an appropriate word choice for Becker to not only describe her daughter but to describe individuals with disabilities in general.
And yet, one of the things Becker doesn't do is to probe exactly what vulnerability entails. For example, Becker's daughter has different cognitive abilities than a baby without Down Syndrome does; does that in essence make her more vulnerable than a non-Down Syndrome baby? Or is Penny's vulnerability a product of a world that it is not made to fit her needs? If the world were constructed to meet primarily the cognitive skills of a Down Syndrome child, then the non-Down Syndrme child who would be vulnerable, not Penny. Or, as biblical scholar Meghan Henning explained it to me, one might think of a blind person to be in the same kind of vulnerable category: Walking through a new supermarket, for example, might pose a real challenge because the blind person can't see where products are shelved. Now imagine the supermarket's signs are all in Braille, and it is the sighted person who becomes vulnerable.
In other words, Becker challenges the reader, by using the term "vulnerable," to consider just what "vulnerable" means. Moreover, she pushes us to acknowledge that those with disabilities are not the only ones who are vulnerable. All of us are. Our bodies are soft, our organs created to work for only a set length of time. Bullets, cancer, clogged arteries, a weakened immune system, hormonal imbalances, and extreme weather conditions demonstrate that none of us are without vulnerabilities. Even our superheroes, to make them seem more human, have vulnerabilities: Just hand Superman some Kryptonite.
And because of that, the barrier between "disabled" and "non-disabled" breaks down. Yet, this dichotomy isn't something our society realizes. In the United States, disability is a negative, a bad thing, a weakness. Even the term disabled signifies that: dis-abled, without ability. There isn't an attempt to link "disabled and "non-disabled" people together; there's only an attempt to divide them.
Yet, until the end of the book, Becker ironically seems intent on explaining Down Syndrome within our culture's frame for disability: She wants to understand her daughter's weaknesses through a term like vulnerability, through her daughter's relationship to her, or to her husband, or to the students at his boarding school.
Resolution for Becker only comes when she stops thinking in society's terms and instead focuses on theological ones. As Becker's relationship with her daughter blossoms, she begins to discern that what our society labels dis-abled or broken, God labels as good, whole, and beautiful. Where we see lack, God sees abundance. Where we see only the physical or psychological suffering that disability can cause, God provides solidarity and meaning and offers only love, not judgment.
A child like Penny is a prophetic child, one that causes Becker and, in turn, the reader, to reconsider what it means to be "disabled." She challenges our culture to think more about how we have treated "disabled" people in the past and how we can do better to embrace difference in the future. And perhaps most powerfully, she challenges us to remember that whatever we do, we do in the image of God, the same image, in fact, in which God has fashioned us.
Follow Danielle Tumminio on Twitter: www.twitter.com/RevDaniBeth