you’re having a baby, continued

A couple of weeks ago, I posted about Mark Schrad’s opinion piece in the New York Times. Oddly enough, a friend who is concerned about these same issues saw my comment on the NYT site and got in touch. Like Schrad, she has an 8-year-old child with Down Syndrome. Unlike Schrad, she supports the Ohio legislature and testified in favor of similar legislation in Indiana. A Public Policy Fellow at Notre Dame’s Center for Ethics and Culture, Mary O’Callaghan holds a PhD in developmental psychology and has written a piece for the Witherspoon Institute’s Public Discourse blog.

Her article highlights the dangers in Schrad’s position, in a professional and reasoned tone. I agree wholeheartedly, and tried to make a similar argument myself in that earlier post. I am so grateful that the work of advocacy is not a solo pursuit, that I have friends who are intelligent and determined and articulate. Sometimes the work of parenting, especially parenting a child with disabilities, can be lonely work–parenting in general is pretty tough and usually thankless. But moments like these remind me that we’re not alone. Children with Down Syndrome need the work of all of us parents–Mark Schrad (whose article has sparked necessary conversation) and Mary O’Callaghan, and many others who advocate for their children and others on a daily basis. Articles like Mary’s in particular need to be written and widely read. Knowing how very articulate and incisive my friend is in her advocacy is a great gift.

If you read my earlier post (whether you agreed with it or not), you should really read this article. She concludes with a punch: Despite the increasingly positive data about Down syndrome, somewhere between 70 and 90 percent of parents who receive this diagnosis choose abortion. I testified in Indiana, not because we are on a slippery slope, but because once we accept abortions based solely on disability, we are already at the bottom.

Indeed so. Let’s hope we aren’t there yet.

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you’re having a baby

Mark Schrad’s op-ed piece for the New York Times is balanced and thoughtful. I am very glad he and his wife chose to have their daughter despite the diagnosis of trisomy-21. But I worry about the way this conversation is going. I worry, because there is a significant difference between the choice to end a pregnancy and the choice not to have a particular baby.

A few years ago, I reviewed Judith Butler’s Frames of War for Modern Theology (27 (3):540-542). As usual, Butler’s writing is challenging and thought-provoking, and covers a wide range of terrain. But one claim in particular stood out to me (and I refer to it in the review): the shift from seeing others as occupying the same moral and political space (i.e. being ‘modern’) to seeing them as outside that space allows us to disregard their common humanity. Now, that is a gross oversimplification, I am sure, of Butler’s nuanced proposal. Yet the basic idea, that the liberal subject is only able to be a party to the waging of war if a sort of shift takes place psychologically, is one of the conclusions of the book. Butler urges us to resist this shift.

What on earth, you might ask, does that have to do with abortion? Butler would surely argue for the woman’s right to choose in every case–or would she? In the event of an unwanted pregnancy, certainly. But once the pregnancy has been accepted and a baby is on the way, the moral ground that we are on changes. Pre-natal testing happens in order for us to find out what sort of baby we’re having and gives us the basis on which to choose whether or not this baby is one we want. The diagnosis, in the case of a baby with Trisomy-21, provides the pivot-point on which we are invited to shift our perspective: the baby would be ‘baby’ if s/he were healthy; the baby with Trisomy-21 loses the claim on our care because s/he is not ‘healthy’ or ‘normal’. That is exactly the shift that we ought to resist.

Having said that, I would add that all those who agree on this question ought to be working very hard to make life with a child (or adult son or daughter) conceivable as good. There is no getting around the fact that raising a child with Trisomy-21 (not to speak of a whole range of more serious diagnoses) will be challenging, and often (but not always–lots happens in the raising of typical kids) more challenging than raising a child with a standard set of chromosomes. We who claim that the child with Down Syndrome ought to be welcomed as warmly as the ‘typical’ child have then to share in the responsibility for loving and supporting that child and his or her family.

imagesJerome Lejune–in the centre of the photo here–did not intend for his work on the chromosomal abnormality that causes Down syndrome to be used to eliminate Down syndrome. He surely would have admitted that it’s not an easy road, and no one can walk it alone. But he would have urged us to see that which many of us who are raising (or have raised) children with Down syndrome have learned: it is not an impossible road, and it is one that can be very beautiful, if we have the eyes to see it.

What’s Down Syndrome?

I am running behind: World Down Syndrome Day was yesterday. In our house, though, every day is Down Syndrome day, so I am posting the video made by the Lejeune Foundation this year. We watched it together, the children and I. My daughter Anna, who has Down Syndrome, wasn’t as interested as I expected. My 8-year-old son, however, asked the $64,000 question: “what’s Down Syndrome?”

I’m not sure whether I answered his question perfectly. He doesn’t know anything about genetics, or chromosomes, or anything like that. I tried. But I don’t think it matters. He’ll grow up knowing what trisomy-21 looks like.

Family.

Friday of the second week in Lent

The reflection on the Mass readings is at thinking coram Deo, as usual–from the manuscript of the devotional. So a saying from the Apothegmata Patrum is included.

Wednesday was the feast of St Joseph; yesterday was the feast of St Cuthbert. Today is World Down Syndrome Day, and I celebrate my daughter–her life, and the way she teaches me about what it means to be a disciple of Jesus and a child of God. For her, indeed, I say Deo gratias.