On disability and illness in a time of pandemic

Life finds a way. So said Michael Crichton (often) in Jurassic Park. True: and yet humans, like the misguided individual who thought raising dinosaurs from extinction was a good–and lucrative–idea, like to mess around with life. This morning I was frustrated almost to tears by the human propensity to play God, especially when disability is concerned. We want to avoid illness and disability–not just for ourselves, but for our families–whatever it costs.

Health, illness and disability. What do we expect for our lives and the lives of our children? Health. We expect health and well-being. We expect the usual range of abilities and capacities: to see, to grow, to hear, to learn, to walk and run, to feel, to think and read and write. These are all good things, and there is nothing wrong with hoping for them, even expecting them. The trouble comes when we begin to believe that we are entitled to well-being and certain forms of achievement–and so are our children (whether we have them yet or not). And we decide which limitations we will accept and which we won’t. Of course we all want to be healthy, and we want our children to be healthy, and insofar as it is up to us, we ought to do what health requires. At the moment that involves some extra caution–more frequent and thorough hand washing, avoiding public places when possible, and wearing a mask and keeping our distance when it’s not possible to stay home. (Soon, perhaps, it will also involve a vaccine–which is good and yet a symptom of the very thing that worries me so much these days.) In more ordinary circumstances we know we ought to eat healthy food, get fresh air and exercise, limit our alcohol consumption, and give up smoking. And I suppose most of us try, a good bit of the time, to do those things.

Even with the ordinary and extraordinary measures that we can take, we may still fall ill. If we manage to avoid COVID-19 (looking all the more possible if this vaccine is as good as it seems to be), we can catch cold, end up with pneumonia, break a leg, go down with norovirus, or develop cancer. Much of what comes our way in the realm of health, illness, and disability is beyond our control.

I hate that, I admit it. I am a bit of a control freak, and like a lot more order than life with four messy kids and a non-neat-freak spouse affords me. I hate it that, despite reasonable eating and exercise habits, my “fat” jeans have become my “thin” jeans and the “thin” jeans of yesteryear have long gone to some lucky person who came across them in a charity shop and could fit into them. I can’t even control the ordinary, daily-life things that I think I should.

Maybe you are better at housekeeping and staying slim than I. But the point is that there are only a very limited number of things in life that are ours to decide, and these mostly fall into the category of responses to what life throws at us. We are not masters of our destiny, we are scrapbookers, arranging the materials we’ve been given into a pattern that makes sense to us. We cannot make one hair of our heads white or black (as Jesus observed)–at least not by sheer force of will. We cannot change our height or bone structure (oh, how I wish I could make myself 5’8″ and fine-boned!), we cannot cast away our spectacles and think our way to perfect vision.

So when I heard on the radio this morning about the careful and agonised consideration that went into a fictional couple’s decision to terminate a pregnancy based on a Down syndrome risk, I thought, ‘oh, poppycock’ (or maybe something less appropriate). It’s not that, because I have a child with Down syndrome, I think nobody should terminate on that basis. I never wanted to have a child with Down syndrome–I was sure I couldn’t handle it. My strategy was to have kids before age 30 and so reduce my risk. When that plan failed, I never thought that termination was the alternative. When I was expecting my first child, at 32, it was out of my hands. And, like Nicola Enoch, who criticised the termination storyline, I’m glad that I failed to avoid having a child with Down syndrome. It’s not easy. But my daughter’s life is absolutely worth living, and it is worth everything that it has cost me to be her mum.

If there is anything that I have learned in my fifty-one years on this planet, it is that I do know with certainty what is best for me. ‘Even the wise cannot see all ends,’ as Gandalf said, and I believe I am not to be counted among the wise. Life unfolds in mysterious ways, and  however sensitively a decision to terminate a pregnancy is portrayed, it is still a decision that ends life. I don’t mean that it terminates the life of an embryo, though it does that. I mean that it interrupts life’s unfolding; such a decision is like leaving life’s crooked path and striking out into the undergrowth to right or left. ‘There are no safe paths’, as Gandalf also said, but it does not follow that we ought therefore to head out into the pathless forest. (If you know anything about Gandalf’s advice, you’ll know he insists that leaving the path is more dangerous still!)

It is simply not the case that we can leave one path that looks like it ends in disaster and make our own way to that happy ending we have dreamed for ourselves. No, as another wise character once said, ‘one often meets his destiny on the road he takes to avoid it’ (Master Ugwe, this time). We cannot straighten life’s crooked way, and we cannot avoid every catastrophe that awaits us. Sometimes life really, really sucks. It is never, ever fair. Usually when it feels fair to us, that’s only because the balance is tipped in our favour, not because the scales are perfectly balanced.

I wish I could tell you there was a guaranteed happy ending. Nope. There’s no guarantee of that. All I can recommend is trying to find peace in the middle bit. Recycle. Love your family. Eat your vegetables. Do what you can. And don’t worry about the danger of the path. It’s probably better to stay on it. You never know when there might be giant spiders or murderous trees in the forest.

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.

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.