Is Down Syndrome Abnormal?

Penny last August, photo courtesy of Chris Capozziello

ab·nor·mal [ab-nawr-muhl]  

adjective

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.

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.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. As a twin, myself, I had never reflected on how that was “abnormal,” though, as you demonstrate, it would be accurately called abnormal. But your reasoning for why “abnormal” is objectionable when describing a medical condition is spot-on: it is meant to suggest something to avoid. Indeed, your analysis informs the title of ACOG’s first practice bulletin (ACOG PB No. 77) where it recommended offering prenatal testing for Down syndrome to all expectant mothers: Screening for Fetal Chromosomal Abnormalities (emphasis added).

    Your point about not wanting to change the words as much as a desire to change the story that is told with those words reminded me of an article of Leticia’s: what’s the point of eradicating the use of the “r-word” if the culture does not change in welcoming the births of those with “chromosomal abnormalities” like Down syndrome.

    Wonderful post as always.

  2. Nancy Huggett says:

    Its interesting because this “abnormal/normal” concept is what made me sit up and wonder, then cheer when our national Down syndrome association (Canadian Down Syndrome Society) made a statement at the UN that reads:
    Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition. The occurrence of Down syndrome is universal across racial and gender lines, and it is estimated to be present in approximately one in 800 births in Canada. Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as “afflicted with” or “suffering from” it. Down syndrome itself does not require either treatment or prevention.
    and can be found at http://www.cdss.ca/positioning/positioning/down-syndrome-defined.html.
    Just something that made me think.

    • I certainly agree with the statement that DS is naturally occurring, but I still think that it is “abnormal” based upon the definition (but not the implications) of the word. With that said, I love this statement and will reference it for the future!

      • Nancy Huggett says:

        Its a good statement, isn’t it? Especially that “naturally occurring part! It pays attention to language and gives us all a different frame. I have a pin on my bulletin board that someone gave me that says “normal is a setting on the dryer.”

  3. I remember reading something not long after our son with Down syndrome was born that said multiple times throughout the text “humans have 46 chromosomes.” Not most humans or typical humans, just humans. I kept wondering what that made my son. Was he not human, too? To me, abnormal has that same kind of pejorative connotation; normal is desired, and abnormal is deviant or wrong or at least less desirable than normal. I like typical/atypical better because it does not seem to imply a preference for one or the other. Our kids do not have a typical chromosomal makeup, but that doesn’t mean that they are less desirable or less human than their 46 chromosome counterparts.

  4. Hi — I just lost my comment :(

    In a nutshell, I don’t think you can “extract” the original meaning of MR from the hatred with which the word “retarded” is used in common speech. Any more than it would make sense to find a benign definition of “imbecile” or “moron” and suggest that medically these words are okay.

    As you know, I’ve been engaged in a conversation with the New York Times around their routine use of “retarded” as a first descriptor — as in “x is severely retarded” or “his retarded son.” You say in this piece that you’re not afraid of words, but would you really be okay with a piece about your family that introduced Penny as Amy Julia’s retarded daughter — which is what you could expect in The Times?

    The standards person there has told me they plan to write a new style note about the word and I hope they retire it.

    The American Psychiatric Association says MR is not used as a medical term internationally and has proposed the name intellectual development disorder for 2013. It’s not used in US federal legislation. Why would we want to go back?

    Just this September the NY Times ran a story with these descriptors: “a mentally retarded mute” and “mute, idiot man-child.” They were writing about The Sound and the Fury, which I think was written in the 1920s, but didn’t bother to update their language.

    The definition above of the word “abnormal” is benign — but it doesn’t reflect the meaning doctors infuse it with. In medical jargon it’s equated with “subnormal” or less than human, as another reader notes.

    That’s why when I had prenatal testing the person “counselling” could tell me that it was worth it to miscarry an “abnormal” baby because then I could have a “normal” one — “perfect” was the other descriptor used.

    The reason twins aren’t viewed as abnormal is that they aren’t seen to be “less than human” and they aren’t discriminated against. There’s a world of difference.

    As you can see, this topic really troubles me. I am afraid of words — I’m afraid of the stigma that is stuck like glue to them and the hatred that lies behind it.

    • Louise, I think we largely agree here, which is why I ended up changing the language I used in the ebook.

      I applaud your work with the NY Times over their usage, but even there I think person-first language or lack thereof bothers me more than MR, which they often shorten and use inappropriately. So yes, I would be appalled to see “Amy Julia’s retarded daughter” but okay with “Amy Julia’s daughter Penny, who has been diagnosed with mental retardation.”

      I also agree with you that the Times (and other news outlets) should update their language to reflect common usage within the community at stake, and I would personally refer to Penny as someone with an intellectual disability rather than someone with mental retardation.

      My point was simply that the denotation of these words and the connotations are different. Rather than insist upon the denotation, I’m bowing to the connotations and yet also working to change the culture in which those connotations arise.

      Again, I think we largely agree here, but I hope these comments have made that a little more clear.

  5. As the mom of a child with special needs I applaud your decision. While you might use abnormal or mental retardation in an appropriate fashion, the majority of the world doesn’t. I prefer the terms typical and non typical. Much less benign.

  6. “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.”

    Do you think that fears, or aversions, based upon such things are unreasonable or unwarranted? It sounds as if you do when you speak of these bases in terms of “cultural assumptions” (are they merely just that?), “cult” (do the relevant ideals really resemble those of Jim Jones or other fringe religious groups?), and “not upon the reality” (aren’t there plenty of aspects of Down Syndrome that do warrant fears and aversions? Surely there are plenty of aspects of raising perfectly normal twins that warrant fear and aversion).

    • Craig, thanks for these questions. While I believe there are health concerns associated with Down syndrome that warrant concern, I think the majority of our cultural fear about disability in general and Down syndrome more particularly arises out of misinformation and bias rather than experience and facts. For example, the life expectancy of people with Down syndrome has more than doubled over the course of the past 30 years, and the vast majority of people with DS and their family members report that they are happy. (http://brianskotko.com/images/stories/Files/ajmg%20self-advocates%20final%20paper.pdf)

      I have written about these cultural assumptions at length, in memoir form, in A Good and Perfect Gift (Bethany, 2011) and in shorter form in various places. See, for instance: http://parenting.blogs.nytimes.com/2010/09/21/is-it-harder-to-have-a-child-with-down-syndrome/ and http://paw.princeton.edu/issues/2010/06/02/perspective/ and http://www.christianitytoday.com/ct/2011/december/perfect-child-disability.html.

      • “the vast majority of people with DS and their family members report that they are happy.”

        I’m not sure that this shows us very much. It may well be that the vast majority people with a missing arm would report that they are happy. Does this mean that fears and aversions to the prospect of losing one’s arm aren’t well-grounded?

        • Honestly, Craig, I think that spending time with a person who is happy and has lost an arm would actually mitigate fears about losing an arm quite a bit. It doesn’t mean that I would actually desire to lose my arm, just as most people don’t actively desire a child with a disability, but it does mean I could receive the startling, even painful, reality of losing my arm with a sense that the future is a hopeful one.

          • What concerns me is the implication is that people’s fears and aversions to raising children with DS are unwarranted. That, I think, is a misleading and overly-simplifying conclusion. What I admire, on the other hand, are your efforts to combat the other extreme: that having a child with DS is all misery, sacrifice, and gloom–that it isn’t a promising path to happiness and fulfillment.

          • Craig, I think it’s a fair criticism to say I “overcorrect” on the side of demonstrating the joy we experience with Penny and the ways in which our lives are pretty regular. At the same time, I think it’s important to try to articulate which “fears and aversions” are warranted and why.

          • I agree with you Amy. Which fears and aversions do you think are warranted? (I wonder if I would have any to add.)

          • In A Good and Perfect Gift I talk about this question a bit as I wrestled with my intuitive response to Down syndrome (this is bad, sad, scary, undesirable) and the reality of life with my baby (pleasant, sweet, loving, and not any more difficult or complicated than other parents I knew). So then I asked myself–what exactly is sad or “not good” about Down syndrome? Is the prospect of an intellectual disability inherently “not good”? To the degree that it separates Penny from herself, from God, from other people, yes. But even there, the separation might actually be caused by the intellectual disability or it might be caused by the responses of people without the disability, in which case I’m not sure that it’s the disability that is “not good” but rather the response to it! I can categorically say that physical suffering is not good, and Down syndrome has a higher likelihood to bring with it physical suffering than 46 chromosomes. Penny hasn’t experienced much of said suffering, and of course I believe that God can bring good out of something not good. So I’m still hard pressed to make categorical statements about which fears and aversions are warranted because so many fears and aversions are external (i.e. a problem within the social order not the person) and/or hypothetical. What do you think?

          • Amy, I like your framing of the question. I’m mulling it over; I’ll try to post a reply soon.

          • Amy, I’m going to respond in more than one installment, and some of what I write out is for my own sake–to help me think things through. Feel free to interject.

            You observe that the apparent badness of DS might be significantly external to the DS itself, in the way, perhaps, that the perceived badness of a raincoat might have less to do with the raincoat (it is perfectly comfortable, durable, water resistant, etc.) but more to do with the contingent and transitory tastes in fashion (it is not this year’s color). The supposed badness of the raincoat is therefore the effect of whimsical trends, and these trends track something other than reason and value. In the case of people with DS, you are particularly sensitive to the way that these value judgments create problems in interpersonal relationships and in self-respect, or self-esteem. Since these latter things are of real significance to the person with DS, there’s a real problem. But such problems don’t (or don’t obviously) originate in the badness of DS.

            I accept idea that there is a notion of value or dignity of persons (and a corresponding regard or respect that is due to persons) that shouldn’t depend on the sorts of features that differentiate people with DS from people without DS. If this were the only kind of value at issue, then the raincoat analogy is quite apt, and, going further, all the problems are in the social order.

            But this can’t, I think, be the whole story. First, there’s a point that, though obvious, is worth emphasizing: we can affirm the perfect dignity of a person with condition X while still affirming that aversions to condition X are entirely warranted. So the choice isn’t between conceding that aversions to DS are warranted and affirming the full dignity of persons with DS. We can affirm the full dignity while also conceding that there are reasonable aversions.

            But what are the reasonable grounds for aversions to DS that go beyond the threats of physical suffering you mention? I’ll try to say something about this next.

          • Craig, I so appreciate your careful thinking on this issue. You are tracking with me completely, as far as I can tell, and I hope I can do the same with you! As far as your raincoat analogy–yes. That’s called the “social construction of disability.” But, as you point out, that must be only one part of the story. Significant, sure. But heart surgeries, early onset Alzheimer’s (likely in many if not all people with DS, at least right now), the threat of childhood leukemia, even the more minor struggles to learn math and see and hear–how do we account for these very real examples of physical suffering? Here’s one attempt I’ve made to differentiate social constructs from real suffering: http://www.firstthings.com/onthesquare/2008/12/the-good-life
            I’d love to know what you think.

          • Thanks Amy. I’m sorry for the delays. You are raising a lot of interesting and important issues. Your essay at First Things raises even more considerations. Perhaps we can sometime get to these other issues. Here though I will still try to isolate and pursue a particular question: what might constitute reasonable grounds of aversion to DS beyond the threats of physical suffering? This time I want to pursue just one type of grounding (I think that there are others). This particular ground concedes that the corresponding value judgments are contingent and socially constructed. I nevertheless want to defend their (potential) legitimacy. I also think that it is compatible with affirming the full and undiminished dignity of a person with DS.

            At the base of the Bavarian Alps, you will find people who can trace their families back to the early 15th century, all making a way of life on the same land. They have developed a rich set of valued traditions in which the Alps place a central role. When a child is born, the family will carry the newborn up into the mountains the first chance it gets, seeking to pass on, from an early age, the love of the mountain wilderness.

            Of course, the special value that these Bavarians have for the mountain wilderness is an accident of history and geography. It is simply what they have come to value. The alpine wilderness is no more intrinsically valuable than the wilderness of the tropics, the grasslands, or, I would argue, the arid mountains of the American Southwest. But the alpine wilderness is what the Bavarians have come to value, and, barring special countervailing considerations, their special cherishing of the alpine wilderness strikes me as both entirely justifiable and normatively significant. These Bavarians would have special, personal, and entirely legitimate reasons to object to the desertification of the Alps. This remains true even if we can point to that fact that the indigenous people of the American Southwest have found comparably rich ways of cherishing arid mountains.

            Now a similar dynamic might be found in our attitudes towards family, childhood, and childrearing. A culture can come to cherish the features of a prototypical childhood. A prospective father can feel a sharp sense of loss at the prospect of not being able to teach his kid how to throw a fastball, to build a fire, or any of the endless other typical, yet peculiar, things that generations have, as result of entirely contingent facts about the world, come to cherish in childhood and in childrearing. The parent may know perfectly well that throwing a fastball is no more intrinsically valuable than performing a Maori haka, but that doesn’t diminish the fact that he cherishes only the former, and reasonably so. Add together enough of these cherished things, and the prospective parent becomes quite strongly averse to the prospect of raising a child in the foreseeable absence of all such things. So it is, I can imagine, with many parents faced with the sudden prospect of raising a child that would have DS. Their aversion remains (and it remains reasonable, I think) even under their full acknowledgement that alternative valuable experiences, comparably valuable (in the kind of objective sense in which tropical wilderness is just as valuable as alpine wilderness), would be made possible.

            So here I’m trying to express the kind of aversion that would remain for me (as a prospective parent) even if I conceded that my regard for things like a “normal” IQ, etc., is merely following the tastes, expectations, and norms arising from the happenstance features of a contingent, and malleable, social order.

            How does this strike you? What kind of weight to you think such considerations legitimately carry?

          • Craig, Now it is my turn to apologize! I am planning a response to your thoughts, but first I wanted to ask if you’d be comfortable with me bringing this discussion onto the blog as a new post? I think many readers would be interested in your points, and I would like to quote you there if you’re up for that. If not, no worries and I will do my best to respond here via comments.

          • I would love that Amy! (And I do still feel it unfortunate that I have so constrained the discussion. I still hope, in due time, to also get to some of the others considerations you are raising, both here and in the First Things essay.)

            I don’t know what you want to quote, but let me note the following typos:

            “in which the Alps place a central role” should read: “in which the Alps play a central role”

            “come” should not have been italicized in “It is simply what they have come to value”

            “This remains true even if we can point to that fact that” should read: “This remains true even if we can point to the fact that”

  7. The other problem with the phrase “chromosomal condition” is its ambiguity. I mean, all of our chromosomes are in a condition of one sort or another. Medical people might mean something specific by the word “condition” but your book is written for lay readers, isn’t it?

    Tim

    P.S. As for the word “abnormal”, I think Marty Feldman ruined it for me forever in Young Frankenstein: http://www.youtube.com/watch?v=yH97lImrr0Q

  8. Thoughtful post. And I love the last line about your love for Penny being typical. That says it all, doesn’t it. And the greatest of these is love.

  9. “I don’t want to change the words, but rather tell a story that might contribute to changing the culture.” Amen AJ

  10. This has been such an interesting discussion, and an article in my local newspaper today addresses it from another angle.

    http://www.thewhig.com/2012/11/28/mans-high-tech-paradise-lost

    Just to summarize, this man lost his eyesight in 2 separate accidents that each blinded one of his eyes. He was fitted with eye implants as part of a test study; they gave him sight for a few months but then it deteriorated (and the study leader diied) so he eventually had them removed. He discusses how he is coming to terms with this 2nd (third, really!) loss and how he has abandoned this “paradise” of being able to see; I’ll just quote a small bit:

    “You have to take the hope and put it to the side now and move on. Maybe I have
    20, 30 years left. What am I going to do? Keep on hoping that my paradise is
    going to see again? Now my paradise is changed to being able to have a decent
    job, inclusiveness in society, a happy family. That’s my paradise. And that is
    very attainable,” he said. “Or, it should be.”

    Asking ourselves what is our paradise is a really good exercise, I think. Very interesting; just thought I’d share this for anyone who’d like to read the whole article.


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