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.

passing: a reflection for World Down Syndrome Day

Duke of Edinburgh I love the fact that there is a World Down Syndrome Day. The videos produced to promote awareness are encouraging, showing people with Down Syndrome as happy contributors to society. This year’s video, which resists the claim that people with Down Syndrome have ‘special needs’, does this perfectly: what people with Down Syndrome need is the same as what everyone needs–opportunities, education, relationships, etc. girl with DS

True. And yet…I have a daughter with Down Syndrome. Her needs are more complicated than that, and I refer to those needs as ‘special’ without hesitation. Not that she doesn’t need education and opportunities and friends. She needs, and has, all those things. We are extremely fortunate in the level of provision for all of my daughter’s needs here in the UK. But I am worried about the suggestion that people with Down Syndrome are ‘just like everyone else’ for two reasons. (NB: the adorable girl pictured is not my daughter.)

First, people with Down Syndrome can lead lives that are remarkably typical. But this cannot be guaranteed, and it cannot be forced. Like all young children, those with Down Syndrome develop at their own pace and their skills and achievements will vary greatly. To participate in some of the things that typically developing kids do easily, most children with Down Syndrome will need extra support. My daughter has just achieved her Bronze Duke of Edinburgh award. The fact that she had to have certain allowances and modifications doesn’t make me any less proud of her. If she had to compete with typically developing kids, doing exactly the same things, she would not have been able to have this incredible experience. Of course I hope that she will achieve the kind of speaking ability that the young woman who narrates the video has. But she might not. So to be properly ‘aware’ of what Down Syndrome is and means, I have to keep in mind that even if my daughter doesn’t ever speak that well, she deserves to be treated with the same dignity and respect as those people with Down Syndrome who can carry on a conversation with typically developing peers.

young man with DSSecond, and more importantly, my daughter has an incredible gift to give me and all those who take the time to listen to her and go at her pace for a bit. What the video doesn’t help us see is the way that I have to slow down and look at the world differently when I am with my daughter. Every day–when I am paying attention properly, anyway–my daughter reminds me that life is not about rushing from one thing to the next. Life is not about what I can achieve. Being human is not about being utterly self-sufficient and autonomous. All the practical things that I can do, my capacity for self-direction, and my ability to interact with the world in an abstract and reflective way have their place in the way that I live my life. Indeed, these things enable me to care for my daughter and to see her for who she is. But very easily I forget that who I am and what I can do are not coextensive. I am more than a bundle of capacities, more than a cache of memories and ideas. My daughter reminds me that the time I have been given is first and foremost for love. Without that, my capacities would have no direction and my memories and ideas would lack the principle that integrates them. I love. The rest is only really about how I express that love, how I live it out in the world.

Passing, in the novel by Nella Larsen, refers to Clare Kendry’s ability (and that of other characters) to ‘pass’ for white. So doing opens to Clare a life that she could not have otherwise had, but it comes at great cost–and to no good effect. In the context of intellectual disability, there is a certain degree to which ‘passing’ is possible. But doing so doesn’t change the way people with more profound intellectual disabilities are regarded. If being able to play on the level field is the goal, then a lot of people with Down Syndrome and other intellectual disabilities are going to be left on the sidelines. football DS

And we will never see how desperately the rules of that game need changing.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Thursday of the 23rd week in ordinary time

But take care that this liberty of yours does not somehow become a stumbling block to the weak. For if someone sees you, who have knowledge, dining in an idol’s temple, will not his conscience, if he is weak, be strengthened to eat things sacrificed to idols? For through your knowledge he who is weak is ruined, the brother for whose sake Christ died. And so, by sinning against the brethren and wounding their conscience when it is weak, you sin against Christ. (1 Corinthians 8:9-12 NASB)
 
For a long time I have wanted to add to the preferential option for the poor a similar divine concern for the broken-hearted. “The Lord is near to the broken hearted, and saves all those who are crushed in spirit,” writes the psalmist. And likewise also the weary (Isaiah 40:31 and Matthew 11:28, for example), and children, and outcasts… So in Paul’s letter to the Corinthians today, I was drawn to the emphasis on the weaker brothers and sisters in Christ. These are (like us) those for whom Christ died. Not only that, but these brothers and sisters are “the least” to which Christ refers and with whom he identifies: whatever we do them, we do to Christ himself.
Passages like this always call to my mind people with intellectual disabilities. This is in part because I have a daughter with Down Syndrome, and I realized long ago that I was no closer to God because I knew some theology that she doesn’t. And it is in part because of the general disregard for people with such disabilities in contemporary culture. Last month, Richard Dawkins suggested that it is immoral to allow a baby with Down Syndrome to be born. (This infuriates and saddens me, but I won’t dwell on it here.) What we do to those with intellectual disabilities–who might very well fall into the category of “lacking knowledge” in Paul’s letter–we do to Christ himself.
The whole orientation of our Christian practice ought to favor the weak, the downtrodden, the poor, the refugee, the mentally disabled–those for who Christ died. I know I often forget that–I think about writing my books and get caught up in the stresses and strains of my daily life. I forget that in my daughter, in my children, in all those around me who most need Christ’s care, strength, and protection, I have not just those for whom Christ died, but Christ himself.
Deo gratias.