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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

What are people for?

Peter Singer is right. He’s recently argued that infants born with severe disabilities are not deserving of the same level of care as you, or me, or our healthy babies. He’s right, that is, if you believe that people are ultimately for walking and talking and interacting with other human beings on this earth. If that were the purpose of human life, if human life had no spiritual or eternal dimension, Peter Singer would be right: use the resources we have for the people who are fulfilling their purpose in life.

But that is not what human life is about, ultimately. Each human being is created for eternal delight in God. And the relationship of each human being to the God in whom we have our being originates with God, not with us. The Scripture tells us that God fashioned us while we were still in the womb; God knows us more intimately than we know ourselves. God gives us our purpose, which is to glorify God and to enjoy God forever (as the Westminster Shorter Catechism has it). Our ability to give glory to God, and to enjoy God, comes from God. Whether or not we appear able to do these things or not is irrelevant: ‘faithful is he who calls you, who also bring it to pass’ (I Thess. 5:24). Delight in God does not depend on our cognitive abilities, but on the relentless love and boundless generosity of the God who brought us into being so that we could enjoy God forever.

Regardless of our abilities, we human beings share one characteristic (which Peter Singer no doubt denies): we are made in the image of God. We who are able to recognize ourselves as participating in God’s being should do everything in our power to allow God’s love and God’s glory to be seen in and through us. Those who are not able to see it nonetheless participate in that love and that glory–and are less able to obscure the image through the evil inclinations of our hearts to which Genesis 6: 5 refers.

Because we are all sharers in the divine image, Nostra Aetate 5 reminds us that ‘We cannot truly call on God, the Father of all, if we refuse to treat in a brotherly way any man, created as he is in the image of God. Man’s relation to God the Father and his relation to men as his brothers are so linked together that the Scripture says: “He who does not love does not know God” (1 John 4:8).’ The council makes no special provision: every person is created in the image of God, and deserves to be treated as our brother or sister. Thus even the relationships we have with one another depend upon a generous self-gift, a love that does not ask to be returned–a love that does not seek its own. We love insofar as we are able, not insofar as the beloved is ‘deserving’ of our love.

No doubt Peter Singer would disagree, and without the belief that we are creatures of a God who has made us for relationship with God and for participation in divine life, what he says makes a lot of sense. But the babies whom he regards as undeserving of our care (and all those whose human lives Singer would find substandard) remind us that we all are destined for the same end, and all equally unable to reach that end without grace. The Holy Spirit who works in us works in us all; we are all in need of the Spirit’s work, whether we have the power of speech, or abstract thought, or mobility. We are for delighting in God, and God makes it possible for each one of us to do just that.

Deo gratias.

La Ferme

So, tomorrow I am going on a retreat at La Ferme, the retreat center for L’Arche. What’s more, the retreat is being led by Jean Vanier. I still can’t quite believe it. Two years ago, I read his memoirs and was amazed by his faith and wisdom; last summer I had the chance to visit La Ferme and to meet Jean; and now, I am looking forward to a whole weekend and a retreat (in English!) led by Jean Vanier. 

What amazed me most in the memoir in letters was his consistent request: ‘pray that I remain faithful to Jesus’. Even after L’Arche was an international organisation, having won him praise from many quarters (he was nominated for the Nobel peace prize), the main thing was still faithfulness to Jesus. 

I admit to being a little bit apprehensive. ‘Healed by those we rejected’, which is the title of the retreat, sounds reasonably intense. My usual retreat involves silence and the daily office with a handful of Benedictine nuns. It’s wonderful. Nobody leads it; there is no ‘input’–except of course there are psalms and Scripture readings, hymns and daily Mass. This is a step outside of my comfort zone. 

I imagine there will be something to be said about it next week. In the meantime–pray that I respond faithfully to whatever Jesus has to say to me through Jean, and through the weekend. 

random acts of unkindness

Let me apologize in advance: this is not a carefully crafted post. I am deeply disturbed by something I saw (over my son’s shoulder) on youtube this morning. The boys were watching a series of clips of people who were the victims of pranks. Mostly, these were the usual sorts of thing–someone opens a cupboard door only to find another person inside, who yells ‘Boo’, or something like that.

But there was one set that showed people playing a computer game, where the object was to solve a maze. At the end, a hideous and frightening face appeared on the screen and made horror-film terrifying sounds. If my kids tricked me with something like that, it might be funny. Not in the case of the last clip we saw. In that clip, a young man was playing the game. As he looked up over his left shoulder inquiringly, I saw that he had an intellectual disability. He hesitated, then continued, reassured by the person holding the camera. I thought: this is not going to end well.

It did not end well. On seeing the horrible face and hearing the associated sounds, the man shrieked, put his fist through the screen, and leapt back howling. As he stood facing the person holding the camera, the camera panned downwards to show that he had wet himself, then back up to his shocked and sad face. Crying, he said, ‘it’s not funny!’

Most certainly not. Not remotely funny. Now, you might say that this is just one of those things. Maybe the jokester didn’t think (I hope not) that it would be such an awful shock for the man. But if that were so, he or she would have put the camera down at once and apologised, and offered some comfort. To keep filming, to make a spectacle of the man so upset by the experience, and then to post it to youtube as if it is just another clip, like the others in the set… well. I don’t even have words for that.

It has haunted me all day long, and will continue to haunt me for a good while, I think. The person behind that camera has a lot to learn from the man in front of it. We are all vulnerable, and to use someone’s vulnerability against him or her is a violation of our basic humanity. My thoughts about this are still in a jumble–but I think there is something to be said here, or somewhere, about how we are in the image of God, all of us, and to disregard that feature of another’s humanity obscures it in us.

Please pray.

Good Friday

The Easter triduum has begun: last night we went (as a family!) to the Mass of the Lord’s Supper. Although the liturgy is not ideally suited for toddlers, the foot washing was fascinating. What on earth was fr Ben doing? The children were intrigued. Even the little one–restless as she often was–managed to be quieter than usual. But the most astonishing performance among the children was Thomas’s. Serving on the altar during Holy Week for the first time, he was more still and attentive than ever before. The book, resting against his head, barely moved–even during the intercessions. His eyes were frequently fixed, wide with wonder, on what was going on in front of him. Maybe it was in part because he was the only kid up there, serving with two liturgically-minded adults, and with lots to do.

Today’s liturgical event will be of a very different character: our Faith and Light group organise the Stations of the Cross. Now it will be Anna’s turn to take part in the action as we move around the church this morning. The liturgy is abbreviated, and simplified; there is that tinge of joy even in the midst of a solemn occasion, which is one of the hallmarks of Faith and Light as it is of L’Arche. We will remember the cross of Christ and be aware of our own brokenness, and in the midst of it will be aware that sorrow does not have the final word. My reflection on the Good Friday readings centres on the cry of Jesus from the cross, as Mark’s gospel has it–a more traditional, I suppose, Good Friday meditation.

But now my toddler calls, and it is time to go.

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.

Aristotle on the soul

This morning a strange thing happened: Lewis and I found ourselves in the car alone. No interruptions from the children, and Lewis about to teach on–you guessed it–Aristotle on the soul. I dug into the topic this morning in the car with an unusual sense of having a stake in the question. The question began as 'how is the soul the form of the body, for Aristotle?' That's quite a difficult question to answer, as it happens, and I expect more conversation will take place the next time Lewis and I have a l chance to take it up. If anyone happens to have an answer to hand, I would love to hear it.
 
Fear not: I am not going to rehearse here Aristotle's doctrine of the soul. My hunch is that it loses something in the process of being summarised. Besides, it is full of paradox and warrants a sort of attention I am not able to give it. But I should, and I will, because what I could recognise immediately in Aristotle's account of the soul is the way it shows up in the Questions on the Soul of St Thomas Aquinas. His account of the soul is, not surprisingly, full of paradox and has been the subject of at least one paper I have read recently, and two that I have given at conferences. Surely there was plenty of conversation about the topic last June at a conference on the soul in Oxford (which I was unable to attend, sadly).
 
The question of the soul interests me because I am very anxious to retain soul language in Christian discourse. No, I don't think it is much threatened in mainstream Christianity, but I do think it is widely taken for granted. That means we tend not to teach about the nature of the soul or its function in our Christian life. I think (not without some background, I promise) that 'soul' names an aspect of human life that is inseparable from body and mind, but not coterminous with either. It's important, because sickness in body and mind is not the same as sickness of the soul; weakness in mind or body is not the same as weakness of the soul.
 
It's important because the question 'In what sense do [people with profound cognitive impairment] have a soul?' (which Frances Young raises in Face to Face) needs an answer that is careful and deeply grounded theologically. I would argue strenuously that people with severe developmental and cognitive disabilities have souls, regardless of whether their engagement with the world around them has grown beyond the level of an infant. The soul is not the same as the mind, and not the same as the body. We are too used to thinking about our relationships with one another and with God as somehow dependent on our own agency. But it is not so, not necessarily so. An infant does not yet exercise the kind of agency that sustains the relationship into which he or she has been born; the relationship exists, to begin with, because a parent does the work of relating to and caring for the infant. Of course our relationships with one another can be mutually intellectually stimulating and emotionally satisfying, and such friendships are to be cherished. But if our relationships depended on others when we were tiny infants, so much more does our relationship with God depend on God.
 
I don't pretend to know exactly what the soul is. I cannot tell you in what sense it is the 'form of the body' for Aristotle. But I think that in saying that we have souls–that we are embodied souls, or ensouled bodies–we are affirming that there is a mysterious dimension to human existence. We are saying that God relates to each and every one of us as a parent to a tiny child, in the sense that there is a tremendous inequality between the parent's ability to understand, to care for, to bear with, and to meet the needs of the infant child, and the infant's ability to do anything for the parent. The idea of a 'soul' can remind us that we receive our very life from God, regardless of the capacities of our minds and bodies. The soul's capacity for God is not diminished by mental or physical incapacity, but by sin.
 
But sin is another topic entirely, best left for another day.