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.

slowly and gently

I can account for the hiatus in posts: last week I was in London for a day exploring the theology and practice of accompanying people with intellectual disabilities through experiences of loss, especially the death of loved ones. Although this isn’t one of my areas of experience or study, I was interested in the journey of accompaniment. What I found was that, like any other interpersonal adventure, the way forward requires less map-and-compass skills, and more listening and patience. Good navigational skills are necessary, but not sufficient, for walking with someone through the valley of the shadow of death–whether the death in question is their own or another’s.

In doing things with my young children, I frequently find myself repeating “slowly and gently”–it started with stirring cake batter. “Slowly and gently.” Then, as my youngest started trying to descend the stairs: “Slowly and gently.” This has never been my strong suit. Doing things slowly and gently and attending to the details requires time (of which I seem always to be in want) and patience (ditto). As I listened to the speakers throughout the day, this phrase came back to me. The journey of accompaniment, at any stage of life, is about going slowly and gently.

Slowly and gently becomes not only advice for toddlers learning to stir; it changes the way I approach theological questions. Attending to the person with me, the person with an intellectual disability, impresses on me the reality of each person’s creation in the image of God. What is it to be human? It is to be in relationship with God, and that relationship originates with God and not with us. Ours is the capacity to receive the relationship God offers us continuously. The question for theological anthropology then becomes, ‘What does the disabled body (including the disabled mind) reveal to us about God?’ If what obscures the image of God in the first place is sin, then intellectual disability is not necessarily something that obscures the image of God. In and through that disability, God is revealing himself, revealing transcendence, divinity.

Because this is so, there are two important features of spiritual friendship with a person with an intellectual disability. First, the relationship that person has with God is no more or less than ours, though it will be expressed differently and experienced differently by us. The obstacles we encounter in relationship with people with intellectual disabilities are not obstacles for God. Relationship with God is not impaired by cognitive impairment. (Sin does that.) The second feature of that friendship is that the revelation of the divine through the divine image is not a one-way street, from those of us who are aware of being made in the image of God to those who are not. We ought to be looking for God’s image in the faces of those with intellectual disabilities, and expecting to find God’s self-revelation there.

But we will only see it if we go slowly–slowly and gently.