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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Monday of the sixth week in ordinary time

Genesis 4: 1-8 (RSV)
Now Adam knew Eve his wife, and she conceived and bore Cain, saying, “I have gotten<span class="footnote" data-fn="#fen-RSV-81a" data-link="[a]” style=”box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;”>[a] a man with the help of the Lord.” And again, she bore his brother Abel. Now Abel was a keeper of sheep, and Cain a tiller of the ground. In the course of time Cain brought to the Lord an offering of the fruit of the ground, and Abel brought of the firstlings of his flock and of their fat portions. And the Lord had regard for Abel and his offering, but for Cain and his offering he had no regard. So Cain was very angry, and his countenance fell. The Lord said to Cain, “Why are you angry, and why has your countenance fallen? If you do well, will you not be accepted? And if you do not do well, sin is couching at the door; its desire is for you, but you must master it.”

Cain said to Abel his brother, “Let us go out to the field.”<span class="footnote" data-fn="#fen-RSV-88b" data-link="[b]” style=”box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;”>[b] And when they were in the field, Cain rose up against his brother Abel, and killed him.


*           *         *


This is going to be a bit wide of the mark, I fear–not really a commentary on the verses at hand. But the thing has been pressing one me for some time, and this passage from Genesis 4 (which continues for another 7 verses in the first reading for today) calls it immediately to mind. That is, we don’t usually interpret this tragic episode in relation to what precedes it in Genesis 3. Yes, it’s the beginning of sin, and it’s amazing how quickly a little stolen fruit leads to fratricide. But it also–I believe–should be read in light of Genesis 3: 16. 

To the woman he said,
“I will greatly multiply your pain in childbearing;
    in pain you shall bring forth children,
yet your desire shall be for your husband,
    and he shall rule over you.”


My thinking about this one verse began several years ago on Christmas Eve. I was listening to the Advent Lessons & Carols service broadcast from King’s College, Cambridge, and noticed that in the reading of Genesis 3, this verse was omitted. Maybe it was just a mistake on the part of the reader, though I doubt it. At the time, I wondered. Surely it can’t have been left out because it is Not Nice. Maybe it was something to do with the institution of patriarchy–maybe we don’t want to think about the imbalance of power that generally obtains in relationships between men and women (which seems to have been confirmed over the weekend, if what I’ve heard about the newly-released film is true). 

Whatever the reason for the elision of verse 16 that year, I am glad for it. Although I never did come up with a satisfactory guess about the rationale for leaving it out, I did begin to think in a new way about the first part of the curse–the business about childbearing. Yes, it hurts. I can testify to that, having had four children (even had one without the epidural). But I don’t think that’s what this part of the verse is about. In the first place, the emotional pain of  pregnancy loss seems to me to be greater than the physical pain of labor. And then there are the things that go wrong: congenital defects of the heart or other organs, genetic disorders, infant deaths. About pregnancy loss or the death of an infant, I have no first-hand experience. But I know what it’s like to have something big go wrong–or, better, to have something very small go awry (one little extra chromosome) with global effects. The pain of childbearing is increased in a fallen world: things go wrong. 

Not for a few years did I realize (probably only as my children grew) that there was still more pain to be had in the bearing of children. Not only do they give us pain as they come into the world, they continue to cause pain (as well as joy, of course) as they grow and change. Not all of the heartbreak involved in raising children is quite as dramatic as the story of Cain and Abel. But there it is. Genesis doesn’t say much about how Eve’s birth experience is. We do,  however, hear about this tragedy. Having two sons myself, I can’t imagine anything much worse than one of them murdering the other in cold blood. The pain of childbearing is increased in a fallen world: we go wrong, and badly wrong. 

For a while, I wanted to write a book about the pain of childbearing, broadened to include stories of pregnancy loss and more. The trouble was that there wasn’t really an “up” side to it. I’m looking again at a verse that’s not particularly encouraging to begin with, and saying, but really, it’s much worse than that. Hardly the makings of a best-seller, there. 

As always, though, there is much more to it than this thin slice of the story tells us. There are small hints in Genesis 3 and 4 that God will make it right: “the Lord God made for Adam and for his wife garments of skin, and he clothed them” (3: 21). And Eve has another son, Seth, whom she regards as being given to her by God (4: 25), and the writer notes that “At that time [people] began to call on the name of the Lord” (4:26).  In the midst of the pain, it is difficult to see how even this (whatever particular this is so vexing or agonizing) cannot fall outside of the delightful arrangement that is the work of the Wisdom of God (Wisdom 8: 1). Yet there is nothing, not even this terrible outworking of the curse, that can escape the truth: “in Him all things hold together.” All things. Most days I fall very short of believing that. But that doesn’t mean it isn’t true. 

Deo gratias.