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.

all quiet

Some days are like that. All quiet except for the sound of the rain, then hail, then rain again on the skylights. Sometimes it’s a happy quiet. Today, not so much. I’ve been thinking about tragedy. Not Greek tragedy or Shakespeare, but disaster and loss. Because the ethics essays are in, and two of them are about abortion, I have been thinking about that, too. It’s all of a piece, really: tragedy. When things go awry, terribly awry, and things fall apart.

My position on abortion has always been the same: it’s not for me. Beyond that, it’s complicated. It’s complicated because my reasons for not having an abortion are not universal ethical principles. Yes, I do think that the growing baby in my womb (no, not now!) is a baby, whether it’s a baby at the embryonic stage or further along. That’s not a universally acknowledged truth. It is a narrative: it is the story that I tell to describe what is happening. I wouldn’t terminate a pregnancy not because I think an embryo or fetus has ‘rights’. (Does the embryo have the same claim on my care as my four children? On what grounds could I decide?) Rather, I wouldn’t terminate a pregnancy because I take life as it comes. I look for remaking, not un-doing. Pregnancy happens. Ok, now what? I look forward. My story changes. A new character appears.

The ball is in my court. How do I play it? In my story, just passing it back, or grounding it (to switch to an American football metaphor) isn’t an option. I have to be creative, flexible, discerning and focused, to be generous, and move the ball forward.

I have to improvise. There’s no script, just my sense of the movement of the plot. This isn’t what I planned. Not at all. But life happens to us when we’re making plans, right? This life.

I appreciate that not everyone lives life in the same way. Pregnancies disrupt our routines–and not just the timetable, but the rhythms of our lives. Bad things happen. Rape happens. Domestic violence happens. What then?

That’s when it gets complicated. My story doesn’t involve either of those tragedies. It does involve a child with trisomy-21, one wanted but extremely badly timed pregnancy and one truly unwelcome, shock-to-the-system, life-altering, body-damaging pregnancy. A pregnancy so disruptive to my whole world that I thought maybe it would have been better if I had lied about the test being positive and quietly terminated the pregnancy. Why didn’t I?

Because that’s just not the way I play it. I improvised. And I came up with a sheared pelvis and the costs of daycare and a horrible 18 months of depression and sleep deprivation…as well as an absolutely delightful little girl.

My story has changed.

I realize that not every story has a happy ending. Miscarriage, infant deaths, children dying of cancer and all the trauma and tragedy in the world remind me of that constantly. We can’t undo it. I read the tragic stories through tears. I pray for the parents and the children–those I know, and many, many more I don’t know. I only know a very tiny corner of that grief, but I know a little bit about everything falling apart. I know that space and time and grace and healing are oh, so necessary and sometimes so impossible to seek, or even to receive. I pray for strength to remake, to mold something new out of the shards and the tears. I pray for hope to hold together the hearts of the survivors, the life-bearers.