Is There Reason to be Averse to Down Syndrome?

Photo courtesy of Chris Cappozziello

A few weeks ago, I asked, “Is Down syndrome Abnormal?” Although that post focused upon the reasons we might or might not want to use the term abnormal to describe Down syndrome, it led into a conversation through the comments section about whether or not there is any reason to fear having a baby with Down syndrome.  I argued that most of our social aversions to Down syndrome either aren’t based in reality (life expectancy has risen dramatically in recent years, for instance, though most people don’t know this) OR are a reflection of misguided social values. But the question remains: is it ever right or reasonable to be averse to or fearful of Down syndrome?

I was going to write a post in which I list all the potential, and frightening, health complications that can accompany Down syndrome. And then I was going to write about the social construction of disability, about how we as a culture need to value people for their intrinsic self-worth, not for their abilities or IQ scores.

But then I decided we are asking the wrong question. I’ve said it before and I’ll say it again: it is virtually impossible to talk about Down syndrome in the abstract. Down syndrome occurs, always, in the context of a particular human being. Each particular human being, regardless of our chromosome count, has particular strengths and weaknesses. And so I can’t really write about aversion to Down syndrome. But I can write about whether or not it is reasonable to be averse to having a daughter like Penny, who has Down syndrome.

Penny has been to the hospital for one heart procedure, four sets of tubes, and two eye surgeries. When she uses a whiny voice, which she does nearly every day, I want to pull my hair out. She is still trying to figure out how to hug Marilee without squeezing too tight and making her scream. When I get a call or an email from school about another set of behavioral challenges, I want to cry.

Penny also reads chapter books out loud of her own volition. She asks me to pray for her to be able to make good choices in school. She works harder to understand math and learn how to tie her shoes and try to pay attention in ballet than I ever did. She climbs into Marilee’s crib in the morning and makes her little sister giggle. Her teachers, friends, and therapists shake their head with some combination of exasperation, wonder, and delight when they talk about her.

Other parents with other children with Down syndrome could give you a list of their kids’ particular problems–the reasons to be averse–and their kids’ particular wonderful traits.

Early on in Penny’s life, whenever she was out of the room, I felt swallowed up by fear. I didn’t have enough experience with my daughter to trust that what was true when she was with  me–her beauty and sweetness and gentleness, my ability to care for her and love her and trust that it would all be fine–was true even when she was apart from me. The abstraction of Down syndrome overshadowed my love. But in time, love erased fear. And in time, the abstract, scary, concept of Down syndrome became the beautiful, life-giving reality of a little girl. And she is all the answer I need.

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. LisaT says:

    That is exactly right Julia – I have tried so many times to write an unbiased answer to a question or portion of my blog and it is impossible. I can’t do it because I can only understand what DS means to Cate not to the population in general. I wouldn’t give up a minute with my daughter for anything and the reason for that is not something I can attribute to DS specifically but I also know it is absolutely related to her genetic makeup – extra chromosome and all.

  2. Tim says:

    Your insight into how Down’s Syndrome does not occur in the abstract but in the lives of real people makes me think of the limitations of labels, AJ. Putting the DS label on someone doesn’t really tell us much about the person, their family, etc.
    It happens at my job too. It’s easy to call people Defendant, Minor, Victim, Petitioner, Respondent, Plaintiff, Witness, Juror. These labels have their usefulness at times, but they can also be shortcuts that prevent the labeled person from being seen for who he or she really is. Completeness is obscured by labels, isn’t it?
    Tim
    P.S. Reviewed Keri Wyatt Kent’s Deeply Loved at my place today.

  3. Craig says:

    “But then I decided we are asking the wrong question. I’ve said it before and I’ll say it again: it is virtually impossible to talk about Down syndrome in the abstract. Down syndrome occurs, always, in the context of a particular human being. Each particular human being, regardless of our chromosome count, has particular strengths and weaknesses. And so I can’t really write about aversion to Down syndrome.”

    It could similarly be said that (human) ambidexterity occurs, always, in the context of a particular (human) being. It could likewise be said that the color red occurs, always, as a property of some particular thing. But it is quite easy, I think, to talk about ambidexterity and the color red in the abstract. We can talk about the benefits that ambidexterity generally brings for the people who have it. Towards the color red, even a very young child can come to have reasonable and informed preferences or aversions.

    So I suspect that there must be something more that is making it virtually impossible to talk about DS in the abstract (or, that is at least making it seem that it is impossible). One might say that, unlike ambidexterity, those who have DS would not even exist without the DS. In this sense, DS is an essential feature. The same, however, could presumably be said of other genetically grounded traits. But we can easily talk about blue eyes, or of Tay Sachs disease, in the abstract.

    Maybe the issue isn’t the genetic basis, but rather the idea that DS so characterizes the person who has it—at the level of personality or “character,” e.g.—that it is virtually impossible to distinguish the DS-related characteristics from any person who has DS. Therefore, it is not so much that we cannot speak of DS in the abstract, but it is rather this: to speak of DS is to inevitably speak of every particular person who has it—and it is to speak of the particular person’s “deep traits,” like personality and character. Unlike blue eyes and Tay Sachs, we cannot really imagine the person with DS as not having DS, since the DS features are so deeply constitutive of the person who has it.

    If, however, this is the issue, then I suspect that the fundamental problem is this: in stating an aversion to DS generally (as opposed to discussing isolated effects of DS, like the particular threats of increased physical suffering, etc.) it is virtually impossible to avoid stating an aversion towards every person who has DS. And, even if one hasn’t come to know and cherish a particular person with DS (in ways that preclude, remove, or silence any aversions to DS), stating aversions to people will DS seems virtually impossible to square with the respect that we owe to these people as persons.

    There are, I suspect, other syndromes whose features are also deeply constitutive of the person who has the syndrome. When, however, these features can be spoken of positively or neutrally, I expect that we would have no real difficulty in talking about the syndrome in the abstract (in these positive or neutral ways). This is because, in such a case, we wouldn’t thereby be stating our aversions to the individuals who have the syndrome.

    These are my initial thoughts. Do they seem like an accurate accounting of the virtual impossibility you sense?

  4. Mark Leach says:

    Thoughtful post, as always, Amy Julia. As I read it, I thought, “instead of the question of whether there is a reason to be averse to Down syndrome, should the question be ‘why is it that intuitively people often are averse to Down syndrome?’” I confess that I have experienced trepidation in approaching adults with Down syndrome; it is a reflexive trepidation that I feel ashamed of as soon as I stick my hand out to shake theirs, learn their names, and start talking with them. I usually chalk it up to some evolutionary aversion to those who appear more obviously “different,” but I wonder if it’s something more damning of me: that I lack the confidence that I’ll be able to connect with the adult with DS. I figure if I’ve experienced this aversion, then certainly others who are not as involved with individuals with DS have as well. So, again, instead of whether there is a reason to be averse, what is the reason some are averse to those with DS?


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