living with Down Syndrome

It happened again this morning: someone referred to folks considered ‘odd’ as perhaps being able to benefit from ‘treatment.’ I don’t know how parents of kids diagnosed with autism take the use of ‘on the spectrum’ to describe someone whose personality or behavior seems persistently at odds with some social conventions. (I’d be interested to hear.) But as a parent of a teenage girl with Down Syndrome, I find the comments worrying. Not because I  oppose the treatment; early intervention really helped Anna. My worry is that we’re narrowing the range of what counts as human and increasingly expecting that whatever goes wrong can be set to rights with the help of such interventions. It can’t. Not everything has a cure.

At the other end of today, I tuned in to a BBC 2 programme, ‘A world without Down’s Syndrome?’ Sally Phillips’ documentary highlights the wonderful possibilities for people with Down Syndrome. Articulate and accomplished people have overcome so much to get so far, and it is amazing. Eighty percent can learn to read; very many will hold jobs and live independently. We meet an actor, an advocate (Karen Gaffney; check out her TED talk), and an Icelandic woman who became famous after writing an article defending her right to life in a context where 100% of pre-natal diagnoses of Down Syndrome lead to terminations. Not every story is like theirs, but the message is clear: having Down Syndrome does not necessarily stop someone from having a fulfilling life. And it certainly doesn’t stop someone bringing joy to others.

The most awkward moment of the documentary, though, comes when a researcher in London asks Sally about what she wants for Olly, her son, should he outlive her. It wasn’t really a fair question. For the parent of a child (of any age) with a serious developmental delay, it can be an utterly terrifying question. Because we stand between our children and the world that would rather they not exist. Because not all of our children will achieve independence. Because we know that, however difficult it may sometimes be to care for children (including grown children) with special needs, they are not simply a ‘burden’. The unpredictable magic that our children bring to our lives happens because of the relationship we have with them. Without a relationship of love, commitment and understanding, the needs cease to be special: needs are simply a drain on the limited resources of our society. The implication of the question is clear: it’s all well and good for you to have this lovely time with your child now, but who will take care of him when you’re not around?

As long as that is the basic attitude, it’s not surprising that the two possibilities, when faced with a diagnosis are cure or elimination. If we can’t cure it, then we ought to get rid of it. But that all depends, I think, on what it is. What does it mean to be human? As long as the answer to that question consists chiefly of capacities and achievements, we will not be able to find a place for people with developmental disabilities in the world. But if we realise that being human means living with what comes our way, we might just find that they have a lot to teach us about our common humanity. Not everything we encounter in life will submit to our will, whether accident, illness, disaster or loss. For so much that ails us, there is no cure, no solution. Life’s for walking through, not for getting around. Let’s do it together.

 

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glad to hear it

I don’t do politics. My British husband knows far more about American politics in the last 50 years than I do. (Before that, I have a slight advantage, having done far more American history, and having studied American religious history. But still.) But today I read a couple of articles about Mrs Clinton’s running mate, Tim Kaine.

Now I know that there’s much I don’t know. And I know that I don’t even know what I don’t know. And I am sure that the New York Times is likely to paint him in a good light. Still, I am finally less despondent about the presidential race. Maybe Mr Kaine is just as ambitious as Mrs Clinton (though I can’t imagine ‘more ambitious’ than Hillary). Certainly he’s flawed.  Of course he’s not perfect.

But usually I complete those online questionnaires during election seasons and find that only the crazies (you know, the people who still believe in the Marxist revolution or want to settle on Mars) fit my particular constellation of what matters. Years ago, my father lamented that I was a bleeding-heart liberal. I thought I might have a T-shirt made with that emblazoned on it, along with the Sacred Heart of Jesus. So I am happy about  a Roman Catholic who opposes abortion (yes, I know he isn’t overturning Roe v. Wade; neither am I–not because I think abortion is ok for other people, but because I think we are stuck with Roe v. Wade and the battle needs to be fought elsewhere) and the death penalty (yes, I know about his record in VA). I don’t know much, but I know enough to know that he’s not crazy, and we’re on the same side.

Maybe I will send away for my absentee ballot after all.

you’re having a baby, continued

A couple of weeks ago, I posted about Mark Schrad’s opinion piece in the New York Times. Oddly enough, a friend who is concerned about these same issues saw my comment on the NYT site and got in touch. Like Schrad, she has an 8-year-old child with Down Syndrome. Unlike Schrad, she supports the Ohio legislature and testified in favor of similar legislation in Indiana. A Public Policy Fellow at Notre Dame’s Center for Ethics and Culture, Mary O’Callaghan holds a PhD in developmental psychology and has written a piece for the Witherspoon Institute’s Public Discourse blog.

Her article highlights the dangers in Schrad’s position, in a professional and reasoned tone. I agree wholeheartedly, and tried to make a similar argument myself in that earlier post. I am so grateful that the work of advocacy is not a solo pursuit, that I have friends who are intelligent and determined and articulate. Sometimes the work of parenting, especially parenting a child with disabilities, can be lonely work–parenting in general is pretty tough and usually thankless. But moments like these remind me that we’re not alone. Children with Down Syndrome need the work of all of us parents–Mark Schrad (whose article has sparked necessary conversation) and Mary O’Callaghan, and many others who advocate for their children and others on a daily basis. Articles like Mary’s in particular need to be written and widely read. Knowing how very articulate and incisive my friend is in her advocacy is a great gift.

If you read my earlier post (whether you agreed with it or not), you should really read this article. She concludes with a punch: Despite the increasingly positive data about Down syndrome, somewhere between 70 and 90 percent of parents who receive this diagnosis choose abortion. I testified in Indiana, not because we are on a slippery slope, but because once we accept abortions based solely on disability, we are already at the bottom.

Indeed so. Let’s hope we aren’t there yet.

you’re having a baby

Mark Schrad’s op-ed piece for the New York Times is balanced and thoughtful. I am very glad he and his wife chose to have their daughter despite the diagnosis of trisomy-21. But I worry about the way this conversation is going. I worry, because there is a significant difference between the choice to end a pregnancy and the choice not to have a particular baby.

A few years ago, I reviewed Judith Butler’s Frames of War for Modern Theology (27 (3):540-542). As usual, Butler’s writing is challenging and thought-provoking, and covers a wide range of terrain. But one claim in particular stood out to me (and I refer to it in the review): the shift from seeing others as occupying the same moral and political space (i.e. being ‘modern’) to seeing them as outside that space allows us to disregard their common humanity. Now, that is a gross oversimplification, I am sure, of Butler’s nuanced proposal. Yet the basic idea, that the liberal subject is only able to be a party to the waging of war if a sort of shift takes place psychologically, is one of the conclusions of the book. Butler urges us to resist this shift.

What on earth, you might ask, does that have to do with abortion? Butler would surely argue for the woman’s right to choose in every case–or would she? In the event of an unwanted pregnancy, certainly. But once the pregnancy has been accepted and a baby is on the way, the moral ground that we are on changes. Pre-natal testing happens in order for us to find out what sort of baby we’re having and gives us the basis on which to choose whether or not this baby is one we want. The diagnosis, in the case of a baby with Trisomy-21, provides the pivot-point on which we are invited to shift our perspective: the baby would be ‘baby’ if s/he were healthy; the baby with Trisomy-21 loses the claim on our care because s/he is not ‘healthy’ or ‘normal’. That is exactly the shift that we ought to resist.

Having said that, I would add that all those who agree on this question ought to be working very hard to make life with a child (or adult son or daughter) conceivable as good. There is no getting around the fact that raising a child with Trisomy-21 (not to speak of a whole range of more serious diagnoses) will be challenging, and often (but not always–lots happens in the raising of typical kids) more challenging than raising a child with a standard set of chromosomes. We who claim that the child with Down Syndrome ought to be welcomed as warmly as the ‘typical’ child have then to share in the responsibility for loving and supporting that child and his or her family.

imagesJerome Lejune–in the centre of the photo here–did not intend for his work on the chromosomal abnormality that causes Down syndrome to be used to eliminate Down syndrome. He surely would have admitted that it’s not an easy road, and no one can walk it alone. But he would have urged us to see that which many of us who are raising (or have raised) children with Down syndrome have learned: it is not an impossible road, and it is one that can be very beautiful, if we have the eyes to see it.

Notes for the 22nd of January

The 22nd of January (in the US) and that Sunday in October designated ‘pro-life’ (ditto) always get under my skin a bit. Why? My suspicion is that beneath my frustration and anger, there is a point about Christian faith and practice. Too often, Christianity is reduced to a program or an issue. The checklist of what to do and what to believe is a lot easier than the command of Jesus to be perfect, or the command to love God completely, and your neighbour as yourself. It is easier, that is, to slap a pro-life sticker on your bumper, participate in the relevant activities every January (and October), and think that you are pro-life.

But being for life, if it is to be a true expression of Catholic faith, must involve a whole lot more than that. It goes without saying that abortion is a tragedy in every case, and more often than not, an avoidable tragedy. Abortion is not, however, the sum of all evil. It is rather, a symptom of the corruption of our hearts–all of our hearts–and of a world in which scarcity and death threaten us. I wonder sometimes whether the energy expended to protect the unborn is really an effort to protect ourselves. Babies are loveable; it is not difficult to evoke sympathy for the children who are threatened by the practice of abortion. it is hard to imagine a person in our culture (or any culture, really) who wouldn’t mourn at the suffering of an infant, wouldn’t extend him- or herself on that child’s behalf. And so it should be.

I wonder, though, whether that isn’t like loving those who love you. The point there seems to be that loving those who love you is not terribly difficult. There is a reciprocity that makes the love you give less costly. What does it cost you to love those who love you? What does it cost you to be concerned for the unborn? Time, perhaps, and prayer–and that isn’t a bad thing. But if the heart of Christian love is forgiveness (see Matthew 18 and John 20: 22-23, e.g.), how can protesting abortion take center stage?

Abortion is an evil that happens in a world in which evil things happen all the time. Is it a worse evil than child abuse? than malnutrition? than the soul-destroying conditions in which thousands of children live? I’m not convinced it is. I think there is a peculiarly self-serving form of human sinfulness that operates when the choice to terminate a pregnancy is made for convenience, or because of disabling conditions. In such cases, I think the word ‘murder’ is not too strong, and I would rank those decisions at the top of the list of godless human judgments. (I say I think.)

What it boils down to, for me, is this: (1) I firmly believe abortion is wrong. (2) At the same time, I view the law legalising abortion in a similar light to the law permitting divorce; Jesus qualified that law as having been given because of our ‘hardness of heart’–though I appreciate the differences between the two. (3) I look around the world and see sin and need and lack of love everywhere. There are children who live in conditions of abject poverty and desperate need–of material goods and also of the love and affirmation they need to grow up healthy and strong. (4) I see plenty of grown-ups with the same sorts of needs. (5) I am concerned that focusing so narrowly on one evil–abortion–allows us to avoid evils more difficult to confront, and commands more difficult to obey. ‘Love your enemies…’; ‘forgive…seventy times seven’; ‘feed my sheep’; ‘make disciples…’; ‘love the Lord your God with all your heart, mind and strength, and your neighbour as yourself.’ Obeying these commands requires us to be pro-life until it hurts us, to extend ourselves for life, to confess our faith in the Giver of Life in all that we think, say, and do. We have to be conscious of the darkness and sin in our own hearts that prevents us from being the bearers of God’s light and life to others. We have to oppose practices that threaten, demean, or undermine life–like torture, slavery, the death penalty, the drug trade. We have to resist hatred, fear, indifference, unforgiveness and the temptation to leave undone the good we can do. We have to put on love and humility, letting our pride and self-sufficiency be crucified with Christ.

Being pro-life is being for Jesus–the Way, the Truth, and the Life–always and consistently. To follow Jesus, to be his disciples, and to be about the business of making disciples, that is what it means to be pro-life. Praying with others for the unborn is good; mourning the loss of those children who never will be because of abortion is good; protesting a practice that allows us to exercise heartless power over the most vulnerable is right and proper. But if we stop there, we cannot call ourselves pro-life. Unless we get up on the morning of January 23rd ready to reach out to the poor, the unwanted, the unloved, the seemingly unlovable and unforgivable, unless we take seriously the call to be witnesses and make disciples, we have missed the point. Jesus came that we might have life abundantly, and to follow him means bearing that life and giving it away every day of every year, in all that we say and do.

So I get angry when the topic of abortion is the litmus test for Christian faithfulness. Of course we ought to oppose abortion–but that isn’t the cutting edge of our faith. If we are growing into the likeness of Christ, we have to have bigger hearts and a broader vision. Jesus was not speaking about ‘the issues’; he was declaring ‘the kingdom of God is at hand’. Jesus came bearing love, and forgiveness, and grace, and life, and he was and is the light that shines in the darkness–and our hope is and will ever be that the darkness cannot overcome Him.

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.