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November 7, 2011

Perfection Obsession: What It Looks Like to Accept Limitations

Amy Julia Becker finds perfection in her daughter’s limitations in her award-winning book, 'A Good and Perfect Gift.'

Interview by Karen Swallow Prior

A Good and Perfect Gift, the memoir by fellow Her.meneutics writer Amy Julia Becker, is, on the surface, about a young, first-time mother learning to accept and embrace her daughter Penny’s Down syndrome diagnosis. Amy Julia’s beautiful and moving writing was just named one of Publishers Weekly’s Best Books of 2011 and received a starred review from them as well.   

But Amy Julia’s struggles with disappointment, anger at God, and fully embracing the “good and perfect gift” of her daughter reflect struggles most believers undergo. For this reason, the book speaks to a far wider audience than parents of children with special needs. In fact, it speaks to all who strive to replace perfectionism with, as Amy Julia writes, “our telos”: the fulfillment of our purpose, “our true perfection.”

To that end, I asked Amy Julia about the temptation to idolize the intellect, responding to people who are insensitive about disability, and the beauty of being a limited, finite creature under God’s care.

So much of your story about raising a child with learning disabilities is, ironically, about your own learning: learning to trust God, learning to forgive offenses, learning to accept life’s imbalances, and, quite simply, learning to parent. Most of these are lessons we all need. Which lesson has refined your character the most?

During the first year of Penny’s life, I came face to face with the fact that I idolized intelligence. Not only did I take pride in my own intellectual ability, I also valued other people based on their intellectual abilities and educational backgrounds. Having a daughter with Down syndrome not only helped me to tear down this idol, but also to open my eyes to the beauty and significance of people with intellectual disabilities. It was a paradigm shift that has helped me participate more fully in the body of Christ and recognize and receive the gifts each person offers.

The tendency to compare—specifically, Penny’s development to that of other children—was at the root of much of your struggle. On the other hand, some readers of your book have used comparison in an opposite way, expressing the erroneous idea that your story counts less because Penny’s condition is not as severe as many other children’s. Can you offer any insights into overcoming this impulse most of us seem to possess to constantly compare ourselves with others?

Sometimes comparisons serve a good purpose: when they enable us to ask one another for help, or when they foster community by helping us realize we aren’t alone. But when comparisons form the basis of our identity (I am a “good” mother because I do x better than my friends, I am a “bad” mother because my friends do x better than me), they inevitably foster alienation, because they lead to jealousy or judgment. Both jealousy and judgment destroy friendships and families, which is one reason comparisons can be so insidious.

You write about the struggle not to take offense when, for example, people say things out of insensitivity or ignorance. However, in dealing with matters of disability or special needs, are there occasions for righteous anger?

Absolutely. Most of the hurtful comments I relate in the book were thoughtless or careless, but they weren’t mean-spirited. I hope people will take more thought and care with comments and language, but I also know that most individuals are not intentionally discriminating against people with disabilities. I save my righteous anger for people in positions of power and the cultural forces at work that discriminate against people with disabilities.

For example, Congress recently unanimously passed a bill (the Kennedy-Brownback bill) recommending that all women with a prenatal diagnosis of Down syndrome receive accurate and up-to-date information. Despite the support for the bill, it has gone unfunded. The prenatal testing industry, on the other hand, has received millions of dollars in federal funding. The vast majority of women with a prenatal diagnosis of Down syndrome terminate the pregnancy.

One of the most powerful parts of your story is when you realize that the question “Who are you?” is more important than “What can you do?,” not only in the context of child development, but in all our lives. Is the tendency to focus on achievement why so much prenatal medical attention to Down syndrome is directed toward a general expectation of pregnancy termination?

I am inclined to believe the illusion of control prompts most parents to terminate these pregnancies. When given a choice, most people opt against uncertainty, and Down syndrome brings with it uncertainty about almost every aspect of development. Of course, it not only brings unexpected challenges but also unexpected joy, because Down syndrome always and only comes through a person and through that person’s whole life story. Clinical terms reduce human life to a list of potential problems in the future. My calling as a writer is to try to talk about Down syndrome in the context of the story of our family, with all our limitations and possibilities intertwined.

You realize at some point that “who” Penny is is inextricably tied to the physical and biological reality of the extra chromosome in the cells of her body: without that extra chromosome, she wouldn’t be Penny. What implications of this incarnational understanding of Penny’s condition, of the human condition, does this have for the church body?

It took me a long time to realize that our limitations—physical, emotional, even spiritual—are part of our God-given humanity. Brokenness entered the world with sin, but limitations were there from the beginning, and they will remain. Penny’s extra chromosome limits her in certain ways, just as all of us experience certain physical limitations. These limitations are not necessarily bad. In fact, to the degree that they enable us to become more vulnerable with one another, to need one another, and to serve one another, limitations enable us to become the body of Christ. 

Posted by Sarah Pulliam Bailey on November 7, 2011 2:39 PM

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