Thin Places

A year ago, I read a book by Michael Berube called Life as we Know It. Berube is a professor of English, and his son Jamie has Down syndrome. His book contains philosophical and practical reflections about Down syndrome in general and about Jamie in particular. In one chapter, Berube discusses the sociology of Down syndrome. He explains how our “scientific” understanding of Down syndrome has changed over the past century. For example, parents who had a child with Ds 100 years ago were told their child would have an IQ between 20 and 40, or be “profoundly mentally retarded.” (An average IQ is 100, by the way.) They were told their children would never speak or read, never solve problems, possibly never even learn to walk. By mid-century, parents of children with Ds were told to expect an IQ between 40 and 60. Now, with Penny, we are told to expect an IQ between 60 and 80. Who knows what doctors will be telling parents of children with Down syndrome in another thirty years?

President Bush speaks about the “soft bigotry of low expectations” when it comes to children from low-income families. How much does the same bigotry impact Penny’s growth? This simple progression of IQ expectations has helped me to give up any attempt to predict Penny’s limits going forward. When Penny was born, many of the expectations that I didn’t even know I had, rose to the surface and were shattered by the words “mental retardation.” And I thought—will this child talk? Read? Die young? Over the next few months, I reset my expectations. I came to peace with the idea, or, as I then thought, the scientific reality, that though Penny’s intelligence would be limited, her spirit could soar. I grew accustomed to the thought that Penny wouldn’t be “book smart,” but that her personality and her “EQ” or Emotional Intelligence Quotient, would be off the charts. And that seemed fine, even somewhat exciting and good, to me.

Now, as Penny keeps pace with many of her “developmental milestones”—learning her letters and colors and shapes and numbers and answering questions and singing along in the car—I have had to adjust my expectations again. And this time, I say, who knows? Who knows if my child will join a book club or love poetry? Who knows if she’ll sing in a choir or dance in a recital or speak in public? Who knows if she’ll drive a car or get married or have children of her own? Who knows if she’ll have a best friend or a boyfriend or sibling rivalry?

I don’t know what she’ll be able to do, but I do now hope for these types of things. I don’t think my expectations are now unlimited. I think I understand that this extra chromosome of Penny’s will slow her down in particular ways. But I’m also no longer willing to trust the experts who tell me exactly how she’ll be slowed down, or to what degree. I’m willing to wait and see, and I expect that over and over again, I will be surprised, and delighted, by my daughter.

All this talk and information about Down syndrome has left me thinking about language. People struggle (myself included) to know how to talk about Penny. I remember when she was first born and I would say that we had expected a “normal” child, which implied that Penny was abnormal. Then I learned the word “typical” and it helped me not to feel that I was maligning my child by calling her abnormal by implication. I also remember calling her a “Down syndrome baby,” as if her extra chromosome defined her more than anything else. I soon modified my description to the wordier, but more accurate, “baby with Down syndrome.”

The most natural words to describe her are ones like cute, sweet, fun, outgoing, beautiful. But then there are the clinical words: chromosomal abnormality, mental retardation, disabled. And the politically correct ones: special needs, intellectually challenged. I have been trying to think about those words and how I want to describe my child, and other children like her, in both a precise way that doesn’t ignore or minimize her extra chromosome but that also doesn’t define her in entirely negative terms. I don’t like so many of the words. First, retarded. The term “mental retardation” may be helpful in describing the fact that Penny will learn differently, and more slowly, than typical children. Unfortunately, the word “retard” and “so retarded” hold very negative connotations in our society. Then there’s “disability” and “abnormality.” My problem with these is that they are automatically negative. When we “disable” something, we make it not work. It is no longer able. Penny may not be able to do the same things on the same timeline as others, but she is not a “dis-abled” human being. In fact, we’re increasingly impressed by her abilities.

One word I do like is “vulnerable.” Penny is vulnerable physically, mentally, even socially and emotionally. Another is “dependent.” Penny is, and will be, dependent upon others for care on some level throughout her life. Both of those words also describe what I want to admit about myself. That I too, am vulnerable, much as I like to see myself as invincible. That I too, am dependent upon others, much as I like to think of myself as self-sufficient. We are learning that Penny is different than other children—more doctors visits, more probable health concerns, slower development in some areas of her body and mind—but that she is also just like other kids. That she is first and foremost, a valuable human being who has much to give to the world around her, especially as we learn how to receive from her.

I have been reflecting more and more about my sense that I know “why” Penny has Down syndrome. I’ve concluded that I was wrong in much of what I previously thought. In general, we’ve heard two “reasons” that Penny has this extra chromosome. One is because we, as her parents, need a child who is not a high-achieving, intellectual, varsity athlete, etc. In other words, we need her as a rebuke to our type-A personalities. The other is that we, as her parents, are such special people that we have been given a special responsibility and a special child. In other words, we have been given her as a reward. Rebuke or reward. As a punishment, as a gift. Either way, looking at Penny through this lens reduces her to a lesson we need to learn, and it makes her existence all about us.

Recently, I was reminded of the story in John’s gospel where Jesus’ disciples ask him about a blind man. They say, “Who sinned, this man or his parents, that he was born blind?” I don’t think anyone is asking exactly that question, but perhaps we could rephrase it as, “Who needed a rebuke (or reward), Peter or Amy Julia (or both), that Penny was born with Down syndrome?” Jesus’ answer is instructive. He says, “Neither this man nor his parents sinned, but this happened that the glory of God might be revealed.”

I’ve been rephrasing that answer too: “Neither Peter nor Amy Julia was so good, or so bad, that they received Penny as a rebuke or reward, but this happened that the glory of God might be revealed.” That answer raises its own problems and questions, but at the end of the day I think it is the better one. It recognizes Penny as a person with a purpose instead of a lesson for us to learn. And it reminds me that Penny’s extra chromosome is not a way of casting judgment on us, as if we were not fit to raise a typical child. Nor is it a way of casting judgment on others, as if we were part of a small group capable of raising a child with Down syndrome. Penny is Penny, and as we’ve said before, we want to receive her as the gift of life that she is, recognizing that—just like the rest of us—she has places of great need, and places of great strength.