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Is Down Syndrome Abnormal?I don’t want to change the words, but rather tell a story that might contribute to changing the culture.
Penny last August
Image: Photo courtesy of Chris Capozziello

Penny last August

ab·nor·mal [ab-nawr-muhl]


1. not normal, average, typical, or usual; deviating from a standard.

A friend of mine recently edited my forthcoming ebook (What Every Woman Needs to Know About Prenatal Testing, Patheos Press) to help ensure medical accuracy, and he suggested I replace the word "abnormality" with "chromosomal condition." It took me a week of thinking about it to decide what I wanted to do in response. I'm sympathetic to his point—most people have negative connotations with the word "abnormal," especially in relation to pregnancy. And yet "condition" doesn't seem descriptive, in a denotative sense, of what Down syndrome and other Trisomies actually are.

In the past six years of knowing Penny and getting to know other individuals with Down syndrome I have become more and more convinced that her chromosomal structure is abnormal, in the sense that most people only have 46 chromosomes. I also believe my friend had an abnormal pregnancy in that she, young and without any fertility drugs, conceived twins. Neither Down syndrome nor twins are in line with the norm.

And yet no one uses the word "abnormal" to describe twins. The denotation—anything that is different from the most common result—makes sense of Down syndrome. But the connotation of the word abnormal, at least for most expectant mothers, is negative and fearful. It is, therefore, applied to medical conditions that our culture deems not only outside-the-norm but also undesirable and frightening. So while I don't have any problem admitting that Penny's chromosomal structure is abnormal, I now hesitate to use the word abnormal to describe it to other expectant mothers.

Along the same lines, I realized recently that I don't have any problem with the words mental retardation when used in their intended form. Mental retardation began as a technical term used by doctors to provide a description of the cognitive abilities of individuals. And as a descriptor, it seems accurate to me. Penny learns more slowly than other kids. It takes her longer to think things through. I am vehemently opposed to the use of these words (and their cognates) to denigrate others, and yet I am not opposed to their use as a descriptor of the intellectual reality of people with Down syndrome.

Image: Photo courtesy of Chris Capozziello

So herein lies my problem. One point I'd like to make on this blog and in my upcoming ebook is that these words– abnormal chromosomes, mental retardation—do not need to provoke fear. The fear they provoke is based upon cultural assumptions about perfection, the cult of normalcy, the privilege of the intellect and economic productivity, and often not upon the reality of life with these conditions. I don't want to change the words, but rather tell a story that might contribute to changing the culture.

With all that said, the words themselves might well create a barrier to readers. And so, upon reflection, I changed almost every instance of the word abnormal to atypical or condition.

I'm not afraid of the word abnormal, and yet I decided to delete it from my manuscript. I wonder about this decision, but  I also know that my thoughts about Down syndrome are no different than my thoughts about William's willfulness or Marilee's feistiness. They are each full of strengths and weaknesses, needs and gifts. Each is abnormal, I suppose, in their individuality. What's more, my love for Penny is as typical as it comes.

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