felix hominum

William Watson Lodge, GRIT & dads of kids with disabilities

I recently spoke to the AGM of an organization which delivers educational and development services to children with disabilities.  The organization is locally known as GRIT - Getting Ready for Inclusion Today.  They are self described as "an exemplary, fully-inclusive, non-profit early childhood program for children with disabilities 2 ½ – 5 ½ years of age."   While I tend to do a lot of public speaking (it comes with the territory in my line of work), it took me quite a while to figure out and put on paper exactly what I wanted to say.

I have read a fair bit of the literature on the topic of family dynamics situations where one or more of child has some form of disability.  But this was more about my own personal experience, as a father who happens to have a child who lives with a disability.  I'll not reprint here everything I said there, but I do want to highlight a few anecdotal items which I believe are important.  These are the sorts of things one hears after the formal address is finished, over coffee, with other parents who are simply looking for a place to tell their story.

None of this is absolute, it is merely a pencil sketch of a few conversations, so let that guide your interpretation.  First come the logistics.  And by this I mean the countless extra trips to doctors, specialists, therapists, assessors, psychologists - you name it, and chances are your kid has had more appointments in a few short months than you have had in your whole life.  Many times it is (in a 2 parent family) the mom who does this.  And many times it is the dad who catches up afterward.  He was at work perhaps, and simply cannot find a way to be there for these events.  This has led in some instances to dad feeling disconnected, playing "catch up".  From the perspective of the mom, it is doubly exhausting to have to retell the entire experience a second time.  She has already heard once that Jane or John has this or that wrong, that nothing can be done for X, that her child will need extra work here or there.  Many two parent families I spoke to that evening found this to be the case.  Sometimes the dad will feel disconnected from what is happening and try to get more involved, more supportive.  But sometimes the feeling of disconnect will result in a feeling of helplessness, and perhaps even further alienation from their child's life.  This is only one small topic among many:  how do fathers get more involved, more informed and more supportive?  And most important of all, is there a place for them to simply tell their story. 

I'll give the rest of talk & some of the feedback in bits and pieces over the next little while.  A few days after I spoke at the AGM, we had a chance to spend a few days as a family at William Watson Lodge.  It is a facility developed specifically to provide outdoor recreation for persons with disabilities and their families. It is set in a fabulous location:  on the shores of Lower Kananaskis Lake in the Rocky Mountains of Alberta.  Our second daughter lives with Down Syndrome, and so we "qualified" as a family to stay at the facility.  For people with mobility challenges, there are some wonderfull accessible trails with amazing views of the Rockies.  It really is a great place to spend a few days.  We are hoping to get back there again next spring, or even during the winter for some X-country skiing & fireside laziness.

 

 

 

 

An address to the Canadian Prayer Book Society

This afternoon I had the honour of being the featured speaker at the annual general meeting of the Prayer Book Society of Canada.  Here is the basic content of the talk I delivered.  I'm sure there are typos, missing sentences,  and errors of a more substantial nature which you may feel free to bring to my attention.  There was a Q&A afterward, some of which I'll add later.  Some of my readers will have heard bits and pieces of our story elsewhere;  some has appeared here, other bits are public for the first time. 

Here is part one.  Part two will follow in a few days, or when I have time. 
Tomorrow is mother's day...

Thanksgiving After Childbirth:  Choosing Sarah Joy in an Age of Options

A Starting Point: 

O lord open thou our lips,
And our mouth shall show forth thy praise.

We are blessed with 4 children – 2 girls and 2 boys –. They range in age from 10 years to 3 years.  Needless to say, our fridge is awash with artwork, our yard is littered with various signs of the small armies passing through, and we have over the past number of years come up with our own “Liturgy for the Blessing of A Minivan” to commemorate this particular stage of parenthood.  I consider myself an accomplished liturgist, and so I thought I would treat the PBSC to a small sample of my work:

LITURGY:

The Community gathers around the BMV.  All should be dressed appropriately;  children should be wearing freshly laundered items, preferably white or light colours.  At no time are the responses to be said or sung in unison: a random senseless chattering is preferred.
The presider (“One”) begins with the ancient latin three-fold form of the “Itemus”.

One:   Here we go, here we go, here we go.
All:      Are we there yet?

The procession leading into the BMV begins, led by the pater familias, children are strapped into various seats, but not in such a way as to imply that their auto-nomous freedom is in any way compromised.  Such an act of contraint  by the pater familias is a remnant of patriarchal power imbalance, and must be recognized as such.

The Prayer of Transport:

We come before you, and indeed even enter into your most inward self, O blessed mode of travel.  We come in the weakness of our commute, our pilgrim journey amidst the busy rush of life.  It is you, O Mini Van, who carry us beyond our present places of indifference and solitude.  In you alone many may gather and vacation as one; it is through you that all are invited to come and share in the One Ride.  

Now we rejoice in the provision you have made for the perpetuation of middle class lifestyle, through the marketing of the domestic and the union made vehicle.  For it is not the destination, but the consumption along the journey, that gives us meaning.

Beneath your hood is mystery; for in the days of our youth we took an arts degree.  And so we abandon all reason as we enter your sanctuary.

The Great Snack:
At this point the elements of the Great Snack are distributed to the Occupants.   The meal must have a chocolate layer which melts on contact with human flesh.  The drink must be of a deep hue, preferably grape or raspberry.
The Great Snack is distributed, after which follows:

The Breaking of the Peace.
Here all assault their neighbours.

Accusations, Confession, & Counter-Accusations.
One:   May One greater than I help you, if I have to stop this van.
All:      It was his/her/their/its fault.
Chaos ensues; night descends.

There are times when I have come to appreciate the circumstances under which the ancient Canaanites sacrificed their children.

PBSC talk:  what is it not about:  it is not about public policy, or the culture war, although doubtless it has implication for such things.

It is, rather, about a person, it is about coming to see the image of God, looking forward to the resurrection of the dead and the life of the world to come.  It is about being shaped by a particular kind of Christian Discipleship, and learning, by grace, to grow into that discipleship – not that I have already achieved or am already there, as St Paul would say, but rather to invite and pray that one’s self might be shaped by such a thing.

A Story

In the winter of 2001 I was attending a clergy retreat with my colleagues from the Diocese of Edmonton.  The retreat leader (I forget who it was), finished one of his addresses with reference to one of his favourite Henri Nouwen books;  “Adam”.  “Adam” is the tale of Nouwen’s encounter with a young man who lived with profound disabilities, and how Christ used Adam to tranform Nouwen’s heart in many ways. 

I thought it interesting enough:  I had read some of Nouwen’s work, but not that particular book; maybe I should pick it up someday when I have the time.  I was scheduled to assist with the Communion service to follow the address, and so I sauntered off to see about robes and bread and wine.  On my way I was approached by one of the staff of the retreat center, handing me a message to call home.

I made a what I thought was going to be a casual phone call:  Alisa was pregnant with our second child, and I was now a veteran of what husbands around the world know as the pregnant lady condition:  perhaps I needed to pick up some ice cream and skor bars on the way home.

Alisa told me that she had just come back from what was supposed to be a “routine ultrasound” (I suppose on reflection there is no such thing), and that our second child was showing signs of congestive heart failure in the womb.  It was unclear at that point what the cause was, or if there were other, additional complications and conditions.

I listened, we prayed.  And as I made my way to prepare for Communion, I was struck by a thought which entered my mind, or my heart, or both:  this child will be your “Adam”.

As we made our way through the medical system over the next several weeks, we discovered that there was a great likelihood that this unborn child also had Down Syndrome – a genetic condition.

We live in an age of options:  one which was very quickly presented to us was that of “terminating the pregnancy”, as they say.  The scientific literature on the topic tells us that upwards of 85% of prenatal diagnoses of Down Syndrome result in that option.   In recent years advocacy organizations for persons with Down Syndrome have noted that all too often, information provided to prospective parents by the medical community has been less than adequate.  

Love and Fear:

I suppose looking back now there are several things which informed and shaped and moved us to make the decision we did. 

In an age where the gift of sexuality is often seen as a means of “personal fulfillment only”, we understood that gift to be exercised for a purpose other than the self, and indeed, other than the immediate other  - the beloved.  It is a gift that, in itself, begets a gift. 

Our decision to become parents is the first means of learning what that elusive phrase “unconditional love” really means in the flesh – incarnated.  Indeed, when it comes to prenatal diagnosis, how can one learn of unconditional love if one begins to select the conditions upon which a child’s place in the family and community must depend.?  The Age of Designer babies is almost upon us.  Exercising the gift of sexuality is an invitation to commit to a great unknown in faith.  Most of us do not consider that unknown at the time; at least I know I did not.  But I knew this:  my responsibility as a parent begins with the exercise of the gift of sexuality.

We had no romantic illusions about what parenting this child would mean. It would mean sacrifices – physically, emotionally, perhaps financially. What would this child’s future be? Would be caregivers for the rest of our lives? How would this impact our marriage, our family, our careers?

As we look back, a big part of the choice had to do with the difference between love and fear. I worked in a major Canadian university with a large teaching hospital. I have many friends in professional fields of health care, education and counseling. As we became more educated about Down Syndrome, and got in contact with people in all of those fields, we began to ease the fear that can easily overwhelm parents of children with disabilities.

As we look back on that choice between love and fear, we recall the saying from the Scriptures that “perfect love casts out fear”. We believe that God is on to something there: that so many of our important decisions in life have to do with the choice between love and fear. We could choose to love this child (no matter what), or choose to be afraid of the future, of how this person would change and affect our lives. In choosing to have the baby, we did not think God would magically “rescue” us from difficulties now or in the future, but that he would give us the grace to learn how to love more deeply through whatever the future may hold.

TWO PRAYERS

There are two prayers side by side in the service of Thanksgiving after Childbirth:  Evidently it has been the custom to pray one or the other, but not both: 

O GOD, our heavenly Father, we thank thee and praise thy glorious Name, that thou hast been pleased to bless this thy servant, and to bestow upon her the gift of a child: Grant, we beseech thee, most merciful Father, that she and her husband may diligently lead this child In the way of righteousness, to their own great blessing and the glory of thy Name; through Jesus Christ our Lord. Amen.

Or the Minister may say:

O GOD whose ways are hidden and thy works most wonderful, who makest nothing in vain and lovest all that thou hast made: Comfort thou thy servants, whose hearts are sore smitten and oppressed; and grant that they may so love and serve thee in this life, that they may obtain the fulness of thy promises in the world to come; through our Lord Jesus Christ. Amen.

Most, if not all, of parents who discover a very difficult prenatal diagnosis experience some kind of grief.  I am not comparing that grief with the experience of those who have suffered through the death of child, but it is a grief nonetheless.  It is the kind of grief which is renewed at various stages:  upon birth - a mixture of joy and trembling;  it is a grief which shows itself again when other children are learning their first words, taking their first steps;  it is a grief which is renewed on the first day of school, and it is a grief renewed with the first instance of name calling and bullying. 

I found myself in the unexpected posture of praying both of these prayers at once – prayers both of thankfulness and rejoicing, and a sense of grief and sorrow at the way in which human brokenness, the effects of the old fault of Adam in the Garden of Eden, are still echoing through our world, and indeed, continue to echo through our very selves – our souls and bodies. 

And there in the prayers are the things into which we must be shaped:  faith in a God who ways are hidden, and yet whose works are most wonderful;  who makest nothing in vain and lovest all that He has made.  Such a “shaping” is not an easy thing.

Parents of children with disabilities get used to the parade of specialists who become a routine feature of family life.  Some years ago, when SJ was probably about 2, we had a visit from an occupational therapist.  It was a fascinating event.  Apparently the natural position of the hand is clenched, closed.  Opening the hand is actually a learned behavior.  We make the mistake of thinking that it "comes naturally", but that is because for most of us, we do not realize how we are taught to do it.
With SJ, the process was intentional and long, and yes, difficult.  This learning to "ungrasp", this letting go of things to which we cling so fiercely, is not merely a physical difficulty.

Sometimes people can be parables:  Sarah Joy is one of them:  she has become to us a living parable.

As the process continues, one discovers that the best way of teaching the proper motions, is the simple process of hand over hand.  Most of us who are parents have done this in one form or another.  Let me give you an example:  In order to teach Sarah Joy a number of very basic hand movements, we engaged daily in the exercise of hand over hand:  my hand over her hand, opening, closing, reaching, touching. 

It is, for me, an image of a life of Christian discipleship lived under guidance.  For in order to be truly shaped, we must allow the hand of Father to be over our hands, the life of Christ to be over our lives, the finger of the Spirit to over our fingers:  And as we submit to that shaping, we become what we are meant to be. 

It is a liturgical act, as are many things in life.   It is the way of Discipleship of Common Prayer:  we pray these things in order to have the hand of God shape our lives and our hearts.

Choosing Sarah Joy means choosing to be shaped under the hand of God, through a most unlikely messenger.  It means choosing, as Jesus did, not to put out a smouldering wick, or to break a reed that is already bending and bruised.  It is to understand that the Christian’s final hope of healing and redemption of both body and soul is the resurrection of the dead, and the life of the world to come.

Beyond Pro birth to Pro life

As I said at the beginning, this talk is not primarily about policies and culture wars, laws and proclamations, but one may find implications for the Christian in some of the things which I have said.

There is a wonderful American poet by the name of Craig Romkema.  He lives with a number of disabilities.  In one of his collections he writes:

You whose language flows coherently,
whose ideas sparkle like wine on the tongue,
remember your gift
and use it well,
for me.

[From the collection "Embracing the Sky:  Poems Beyond Disability"]

One of the things which separates the community of the intellectually disabled from other communities searching for rights is the great lack of self-advocacy.  Unlike other oppressed minorities, they have few self-advocates.  They do not stage demonstrations or run for parliament.  They do not organize media campaigns or engineer public vocabulary.  They do not file human rights complaints or challenge court cases.

Perhaps because of this, as a church we are woefully behind in bringing the Gospel to bear on the advances in technology.   In an inclusive church where many are looking for "sacramental inclusion", we are perhaps called to speak for those who may not even make it to the baptismal font. – they cannot speak for themselves.  Yet the final word cannot be mere silence, as some of the postmodernists or nihilists would have us believe.  It must be praise:

O GOD, our heavenly Father, we thank thee and praise thy glorious Name, that thou hast been pleased to bless this thy servant, and to bestow upon her the gift of a child: Grant, we beseech thee, most merciful Father, that she and her husband may diligently lead this child In the way of righteousness, to their own great blessing and the glory of thy Name; through Jesus Christ our Lord. Amen

The answer, I submit, is not to be found in more law; it is to be found in more grace...

[Part Two to follow in a day or two or three..]

what a person with Down Syndrome taught me about sin of grasping

Parents of children with disabilities get used to the parade of specialists who become a routine feature of family life.  Some years ago, when SJ was probably about 2, we had a visit from an occupational therapist.  It was a fascinating event.  Apparently the natural position of the hand is clenched, closed.  Opening the hand is actually a learned behavior.  We make the mistake of thinking that it "comes naturally", but that is because for most of us, we do not realize how we are taught to do it.

With SJ, the process was intentional and long, and yes, difficult.  This learning to "ungrasp", this letting go of things to which we cling so fiercely, is not merely a physical difficulty. 

Sometimes people can be parables.

The rest of the talk: "Thanksgiving After Childbirth:  Choosing Sarah in an Age of Options", will be given on Saturday, May 9 at 2pm (St Tim's church, 8420- 145 St, Edmonton).  It's part of the program of the Canadian National Prayer Book Society AGM.  The talk is open to the public, and in the spirit of common prayer, it's about how one person taught me (and still does teach) many things about the Risen Christ.  I'll post it here sometime afterward.

Special Olympics: top bowler challenges Obama

A bit of a response to President Obama's "mis-speak" during his appearance on Leno.

Special Olympics offers to send bowler to White House

COREY WILLIAMS
Associated Press
March 20, 2009 at 1:36 PM EDT

ANN ARBOR, Mich. — The Special Olympics Michigan president said Friday she'd welcome the opportunity to send the nonprofit's top bowler to the White House.

U.S. President Barack Obama made an offhand remark on The Tonight Show Thursday comparing his bowling to “the Special Olympics or something.” He quickly apologized and told the Special Olympics chairman he wants to have some Special Olympic athletes visit the White House to bowl or play basketball.

Kolan McConiughey, who is cognitively impaired, has bowled five perfect games since 2005, said Special Olympics Michigan President Lois Arnold.

“It would be an honour for him to bowl with the president of the United States,” Ms. Arnold said.

Mr. McConiughey said Friday it's been that long since he last bowled a low score like Mr. Obama's 129, and challenged the president to a bowling match.

“He bowled a 129. I bowl a 300. I could beat that score easily,” Mr. McConiughey said in the Colonial Lanes bowling alley in Ann Arbor.

article at the Globe and Mail

Jon Buller, I never said thank you

Canadian musician Steve Bell was in town recently with a few friends:  jazz pianist Mike Janzen & singer/songwriter Jon Buller.  The local date of the tour also included some numbers by the newly signed Kerri Woelke. 

I love Steve Bell's easy story-telling style.  He weaves music and memories together.  I was tempted to say "at his performances", but I have never had the sense that his shows/concerts are performances.  He has an unmatched stage presence. 

I was really delighted to hear Jon Buller again.  I had the privilege of working with him many years ago for a one-off weekend event in Winnipeg - he provided the music for a regional event & I think I came up some sort of talks/events, under the auspices of some great folks from the local Anglican diocese.  I had never listened to his music prior to that event, and picked up a couple of his CDs.  One of his songs has had a special place in my heart for a long time.  It was just around the time that we received the news that SJ was suffering from congestive heart failure in the womb, among many other probable medical difficulties.  Shortly thereafter we received new that SJ also was likely to live with Down Syndrome, should she come to term.

We went home and my wife went to sleep.  I remember wanting to pray, but not knowing where to begin.  For some reason I put on one of Jon's CDs, and played a track called "Lord How Excellent".  It is based on Psalm 8

When I look at your heavens, the work of your fingers,
   the moon and the stars that you have established;
what are human beings that you are mindful of them,
   mortals that you care for them?

O Lord how excellent is your name in all the earth.

The song itself speaks of praising God in the midst of difficulties, remembering that there is healing in the act of praise.  Jon helped me through that night, and many nights to come.

Thank you.

Difference is normal - disability in the Arab world

Ibrahim, Shafic, Ghassan, Ahmad, Kholood, Hamad, Marwan, Mayssa and Hanadi live their lives despite their disabilities and all they want is to be accepted and respected...

via the International Coalition on Abuse & Disability
& ht Winston of Black Riders

It was here about 8 years ago

at this retreat center that I received a phone call from my wife, telling me that what was supposed to be a routine ultrasound turned up a picture of our unborn child suffering from congestive heart failure.

Since I'll be there on silent retreat for the next few days, I wrote this post ahead of time, and set it to publish at the time of the mid-morning Eucharist.  It was just before the service.  Got a message to call home, which I did. 

At communion we prayed for my wife and child.  Across the way from the main retreat house there is a simple, small monument entitled "To the Unborn".  I visit it every time I come here.  God met me there in a particular way 8 years ago. 

SJ is now a grade 1 student, ballet enthusiast & beginning skater, living with Down Syndrome.  Maybe I'll bring her here someday, and we'll both meet God together.

Eucharisto - I give thanks.

Edmonton Down Syndrome annual Buddy Walk

John Carle gives us an update on Sunday's annual Buddy Walk:

Today was the 4th annual “Buddy Walk” for the Edmonton Down Syndrome Society, as part of the national “Down Syndrome Awareness Week”.

As the father of Gabriel, a great little man with Down Syndrome, I’ve had the pleasure of attending 3 of the 4 walks. It’s an eye opening experience and one that fills me with both pride and joy at the same time. Pride and joy in the people who were there.

Let me start by throwing out some statistics… 1,200 people showed up. Impressive. $92,000 was raised. MOST impressive.

These are 2 statistics that are deserve of my pride. But this isn’t what I’m talking about tonight when I refer to MY pride.

Also, while I am naturally proud of Gabriel and my entire family, I’m not talking about them. (At least, not today…)

Also, while I marvel at the amazing people with Down Syndrome that I get to meet at this event, it’s not the pride that I have in them that I want to talk about tonight. Although they certainly deserve a special mention, and have a soft spot in my heart!

Money raised is being used toward a dedicated medical facility for persons with Down Syndrome, in conjunction with the University of Alberta system.

Edmonton Down Syndrome Society

"They asked the family not to take him home"... 41 years later

Matthew achieved the highest Scouting honour by becoming an Eagle Scout:

Matthew, who lives with Down Syndrome, has been involved in Scouting for 23 years. Fewer than 1 in 1000 special needs Scouts make this achievement.

Nov 1-7 is National Down Syndrome Awareness Week

The Edmonton Down Syndrome Society (EDSS) 4th Annual Buddy Walk,
November 2, 2008 at Hawrelak Park

Every participant helps promote the importance of understanding, acceptance and awareness of people with Down syndrome.

Pledges collected will help fund the Down Syndrome Medical Clinic at the new Edmonton Clinic. This clinic will provide dedicated services to people with Down syndrome of all ages.

For more info, contact your local branch of the Canadian Down Syndrome Society.

Edmonton branch info is here.

brochure as pdf.

The CDSS has features on a number of regional events here.

Trisomophobia: What Palin Triggered

It seems that 6 month old Trig Palin, the son of some American politician, is making his weight felt in not just one, but two countries.  In particular, Trig has sparked something in Dr Andre Lalonde.  Dr Lalonde, according to the Society of Obstetricians and Gynaecologists of Canada (SOGC) has "developed an expertise and is an advocate for safe Motherhood and family planning as well as promoting women’s empowerment for reproductive health."

In a recent Globe and Mail article entitled "A message of hope - or pressure to keep the baby?", Dr Lalonde is quoted as concerned that Trig might  "have an implication for abortion issues in Canada".  According to the article, Dr Lalonde seems to think that "Ms. Palin's widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same".

Two things.  First, in case I forgot to mention it, Trig lives with Down Syndrome.  Second, it seems that Dr Lalonde is advocating for the wrong kind of testing;  if his concern is that the parent will lack "emotional and financial support", then perhaps he should advocate testing potential parents before they get pregnant.  But somehow I don't think he'll go for that.  Or he could simply join forces with the Canadian Down Syndrome Society to improve resources for parents whose children live with Down Syndrome.  If one raises "support" as the issue, then one should be just as vocal about improving that support.  Perhaps Dr Lalonde's comments were "taken out of context" as they say.  Or at least as they say when a comment is found to be lacking in wisdom or compassion.

(ed update: - I recall Dr Lalonde's last comments in a national Canadian newspaper.  The SOCG began recommending genetic testing for all pregnant women and "automatic" genetic testing for pregnant women over 40.  "Choice"?  What exactly does it mean to be automatically given a test?  Here is what he had to say in comment to the National Post:   “Yes, it’s going to lead to more termination, but it’s going to be fair to these women who are 24 who say, ‘How come I have to raise an infant with Down’s syndrome, whereas my cousin who was 35 didn’t have to?'"  Think that one through.  Carefully.

Dr Lalonde, who says that "above all else, women must be free to choose", seems in fact to be worried by one choice in particular:  Sarah Palin's choice to have a child with Down Syndrome.  He is worried about Sarah Palin's choice to have a child with Down Syndrome.  I don't take a huge interest in American politics, but I do take an interest in the one person who might be forgotten in all of this.  In the midst of this, it might be easy to forget who we are talking about: Trig.  It is easy in the article to forget Trig.  For those frightfully worried about Trig's presence in the world, it might even get worse:  Trig might learn to walk in a little while, perhaps use signs and then start talking.  Maybe even take up an interest in music, start going to school and hanging out with friends.  Get invited to a birthday party, and then host a birthday party of his own.  Take swimming lessons, help dad build a playhouse, read out loud before bed.  Before you know it, that "emotional and financial" burden is returning the investment in spades (but more often in hugs and laughter).

I have sometimes wondered what would happen if the Down Syndrome community coined and used a new word: trisomophobic.  And kept on using it.  But you know what?  They won't, even though such "tactics" seem to have worked well for other groups in public debate.  And why won't they?  In the years I've been involved with people who live with Down Syndrome, it seems that they are not interested in debate, or scoring rhetorical points, or the great machinery of politics.  Instead they trade in only one commodity:

Love.

Trig just might influence someone to rethink a possible abortion due to genetic anomalies.  Let him.  It happens, Dr Lalonde.  I know because someone told me the same thing - they saw our family, imperfect as it is, and they took a new view.  We are not heroic parents, my wife is not governor of a state, we are by no means wealthy.  We are not out to change the laws, just the hearts.

Go Trig.  If you need a pen pal along the way, you can write to SJ:

some updates:

The LA Times blog, which first circulated this story in the States, is now saying this. 

There are numerous persons in the Down Syndrome community who have reacted to this story.  I'll try to assemble some links and post them later.

Dr Lalonde is also quoted in this article as wanting to reduce the number of abortions in Canada.  Caveat emptor.

Much, much more on Dr Lalonde's organization here:  Thoughts on Dr Andre Lalonde & Trig Palin

quote of the day - Dr Henry Morgentaler

I'm not going to debate whether he should have gotten the award.  What caught my eye was a quote in the Globe and Mail:

"The fact that some people are opposed on religious grounds mainly, well, that doesn't bother me as long as they're not allowed to influence other people by force or by whatever other means," he said.

Globe and Mail
(emphasis added)

I'll gladly give him the "force" thing. 

But "by whatever other means"?  Really?  Seriously?  This has got to be a case of a truncated quote, or missing context, or bad reporting, because otherwise....ummmm... you are against something like this:

Technological advances in fetal screening are presenting parents, and doctors, with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited, biased, information, more than 90% of prospective parents in Canada choose termination if their fetus is determined in prenatal screening to have Down
Syndrome. They may never know there is a world of resources, possibilities and support out there. In spite of tireless efforts from support groups their information rarely reach prospective parents at the time they need it most.

In Canada the recent recommended expansion of screening protocols called for by the Society of Obstetricians and Gynecologists Canada has not been accompanied by a call for the expansion of the provision of non prejudicial information which outlines not just the potential medical conditions sometimes associated with Down syndrome but also about the richly rewarding lives possible for citizens with developmental disabilities in Canada. The United States recently called for the re-introduction a Prenatal Diagnosed Condition Awareness Act.

The CDSS acknowledges that in Canada women have the legal right to make decisions about the progression of their pregnancies; the CDSS insists that each individual family be given, without prejudice, information that accurately reflects the realities of a life with Down syndrome and other developmental disabilities.

Canadian Down Syndrome Society

So to live by Dr Morgentaler's quoted code of ethics, if someone comes up and says to me:  "Hey, I am thinking of abortion, because we just found out that there might be some sort of genetic thing happening with the fetus, and we hear that kids with Down Syndrome are awful and suffer a lot and all that stuff  - well, it's just better to have the abortion now",  I should simply keep silent?  I, being a "religeous" person should not be "allowed to influence other people" by "whatever other means", such as giving them information as presented by the CDSS?

Well, I'll have to think more about this.

 

Sunday blessings: "Things Danny Taught Me: A Father's Story"

He stood there, dignified, in his polyester fastfood uniform, earnestly waiting for the bus and oblivious to the river of traffic around him, to the forced smiles and brief, uneasy glances from passersby.

In a world of multiple urgencies and lives racing at 50 mghz, he had one focus only--in this case, the Laurel Canyon bus to McDonald' s. He was alone, and he needed to concentrate. He had a job. That meant a schedule and responsibilities.

Stopped at the light, I watched him through my windshield. He was eighteen or so, short black hair slightly askew, with the thick body and unfinished facial features so common to Down's syndrome. Three years ago, I would have looked away, just as the other people nearby on the street were doing now.

But instead I just watched. I find that I can't look away anymore, not from Down's people, not since Danny...

You discover a lot about yourself. I assumed, with the callousness writers seem to perfect, that this "Danny thing" would be the source of so much good material. Well, he is; but not remotely in the way I expected. For the two years since his birth, every time I've sat down to write about him, an arctic silence has settled into my head. Danny will not be used. He is too intimate, too demanding, too funny, too eager to play; he does not fit conveniently into a prefabbed holding pen for the mentally handicapped. And I am too ignorant and not far enough along the road to offer any advice, other than to recount the experience of my own family.

I know that this is doable. It hasn't been easy, but it hasn't been a cross either. You stop thinking like that. Danny's just here, he's part of our normal routine. You adjust. Our manage has the same love and strengths, and also the same faultlines, it always had. So does the family. You learn to stop melodramatizing; you get tired of your own bathos.

I also know that we've been given a gift. A friend, Chicago novelist Patrick Creevy (Lake Shore Drive), the brother of one Down's person and father of a Down's daughter, puts it this way: "The best thing [about a mentally handicapped child] is having a son or a daughter in whom you're never disappointed; you're absolutely out of the business of disappointment .... So many of the expectations that in parents turn tragic, we're safe from. And in its place comes this wonderful, unconditional love, an unburdening from the hunger for perfection."

It's a kind of redemption. You enter a community--parents of sick and handicapped children--filled with far harder stories than Down's syndrome; where quiet, heroic love is an ordinary affair, and you learn from it.

Francis X. Maier is Chancellor for the Archdiocese of Denver and Special Assistant to Archbishop Chaput. This article first appeared in Commonweal magazine.  Full article available at Be Not Afraid.

Sunday blessings: John Van Sloten - converted by an unusual missionary

Fifteen years ago, my wife and I had a son born with Down syndrome. His birth was devastating to me. That first night, I ran scenario after scenario of how shitty life would be as a father of a "retarded" child.  Will I ever love him? Will I have to take him bowling with other disabled kids when he's eight — bumpers in the gutters because no one could throw a ball straight?

Will he have any friends at 18, or will he sit alone in some high school cafeteria? And when he's 40, and I'm dead, will he rot in some horrible institution?

It was a rough night.

'That must mean I love him'

Three months later, while doing some community service in Rochester, N.Y., I got some answers.

I met a 40-year-old man with DS. His life was filled with meaning and he was the centre of his church community.

Two days later, I met an eight-year-old DS boy whose beauty and physical strength were so readily apparent. He kept showing me his muscles! Then, I met an 18-year-old DS teen whose social calendar was too full to have any time for the likes of me.

And then the next day, while driving back home to Toronto, the most powerful answer came. I caught myself missing my little boy, and thought, "Well if I miss him, then that must mean I love him."

Through the tears of that moment, it then hit me. God knew. The night I was running all of those anxious scenarios, he knew the answers I found in Rochester laid ahead.

The curtain pulls back

And then the epiphany came. It was like a curtain was pulled back and, in that moment, I got to see a glimpse of the goodness of God — absolutely huge, mysteriously holding all of reality, powerfully sovereign over all things, providentially moving and loving it all.

full story from the CBC

ps - John is now a pastor at this church, which has done some great things for a friend of mine.

The selectivity of a (non) inclusive church

It appears that a report from the  Anglican Church of Melbourne has recommended we move to a less-inclusive Church, especially in the case of "foetal abnormality, when abortion was 'the least problematic solution'".  Thanks to Scott for drawing this to our attention

The Church of Melbourne's home page features three great articles relating to children and youth.  I was particularly struck by the one entitled "Archbishop calls for national inquiry into childhood depression".  Hmmm.

Where should one turn at such times for a vision of the inclusive church?  Perhaps to those who are the forefront of the move toward "inclusivity":

"Planned Parenthood is an organization that I have always admired and respected. It does such extraordinarily fine work, and I'm very happy to be associated with it."

Rt Rev Gene Robinson, interviewed here.

"...we must challenge the condemnation by the Church throughout the centuries of such things as masturbation, birth control, abortion, and homosexuality."

Rt Rev Michael Ingham, article here.

It's true that we are not a single issue church.  It's a worldview.  Of course those with "foetal abnormalities" are included as a large subset of the objects of the "extraordinariiy fine work" which is done. You can see that such fine work is done in almost 85-90% of say, foetuses with a diagnosis of Down Syndrome.  But don't take my word for it.  Such extraordinarily fine work has been detailed elsewhere: 

Caroline Mansfield, Suellen Hopfer, Theresa M. Marteau (1999). "Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review". Prenatal Diagnosis 19 (9): 808-812.  PMID 10521836 ; David W. Britt, Samantha T. Risinger, Virginia Miller, Mary K. Mans, Eric L. Krivchenia, Mark I. Evans (1999). "Determinants of parental decisions after the prenatal diagnosis of Down syndrome: Bringing in context". American Journal of Medical Genetics 93 (5): 410 - 416

This is why I find talk of an "Inclusive Church" rather, well, deficient at best and deceptive at worst.  I have long known that the Episcopal Church has been active in the Religious Coalition for Reproductive Choice.  The latest op-ed from the Rev Anne Fowler celebrates this fact.

I am not convinced.  It is precisely those who require of us a sacrificial love, who will lead us into the Kingdom.  Of course we don't want to offer such sacrificial love, and so we look for the "least problematic solution".  We don't really want to practice Jesus' unconditional love;  we just want to use it as a slogan at synods, in church newspapers and in comments on our favorite blogs.  Don't let us see what it really looks like.

SJ, former "foetus with abnormaiity", presently 6 year old person living with Down Syndrome, showing a piece of "extraordinarily fine work".

For some, full "sacramental inclusion" means reaching the baptismal font...

"Buddy Walk" photos - Edm Down Syndrome Society

A few pics from the annual "Buddy Walk" in support of persons living with Down Syndrome are now up on the EDSS website.  Funds raised go to support the development of the new Edmonton dedicated health clinic for persons with Down Syndrome.

National Down Syndrome Awareness Week - prenatal screening

November 1-7 is National Down Syndrome Awareness Week.  There are a number of resources on the Canadian Down Syndrome Society site.  Tonight the Felix clan and assorted friends will be celebrating with the Edmonton L'arche community.  Festive dinner, and an evening of fun and entertainment, and prayer for those among us who live with developmental disabilities. 

Over the past few years I've come to notice that the Canadian Down Syndrome Society has put out a few more resources dealing with a rather touchy contemporary issue - prenatal testing.  Representatives of the CDSS had a commentary published in the Canadian Journal of Obstetrics & Gynaecology [J. Obstet. Gynaecol Can2007;29(7):580–582], raising concerns related to the quality of information available to parents who undergo prenatal screening.  They also issued a press release, an excerpt of which is here:

Technological advances in fetal screening are presenting parents, and doctors, with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited, biased, information, more than 90% of prospective parents in Canada choose termination if their fetus is determined in prenatal screening to have Down syndrome. They may never know there is a world of resources, possibilities and support out there. In spite of tireless efforts from support groups their information rarely reach prospective parents at the time they need it most.

In Canada the recent recommended expansion of screening protocols called for by the Society of Obstetricians and Gynecologists Canada has not been accompanied by a call for the expansion of the provision of non prejudicial information which outlines not just the potential medical conditions sometimes associated with Down syndrome but also about the richly rewarding lives possible for citizens with developmental disabilities in Canada. The United States recently called for the re-introduction a Prenatal Diagnosed Condition Awareness Act.

The CDSS acknowledges that in Canada women have the legal right to make decisions about the progression of their pregnancies; the CDSS insists that each individual family be given, without prejudice, information that accurately reflects the realities of a life with Down syndrome and other developmental disabilities.

The Canadian Down Syndrome Society is joining with regional parent support groups to ensure that the federal government enact a Canadian Pre diagnosed Conditions Awareness Act and that the provinces and territories participate or enact equivalent legislation within their jurisdictions. This Act, would ensure provinces and territories responsible for health care set aside reasonable resources, allowing organizations like the Canadian Down Syndrome Society to create and distribute informative, value neutral information to women and perspective families.

full text here

Asides which come to my mind:

Is this a matter of "inclusion"?  What does the "inclusive" church have to say on such issues?

How are to learn "radical" and "unconditional" love, unless we receive those who will require such love from us?

Annual Canadian Down Syndrome Society "Buddy Walk"

The Edmonton Down Syndrome Society (EDSS) 3rd Annual Buddy Walk, November 4, 2007 at Hawrelak Park.

Every participant helps promote the importance of understanding, acceptance and awareness of people with Down syndrome.

Pledges collected will help fund the Down Syndrome Medical Clinic at the new Edmonton Clinic. This clinic will provide dedicated services to people with Down syndrome of all ages.

Walk information:

9:30 am: Check-in/Late Registration
11:00 am: Walk Begins (2.5km), Followed by Lunch and Prizes

Further info:  Edmonton Down Syndrome Society

the life of eliot, storyteller

Eliot lived 99 days. 
He was born with Trisomy 18.

Eugene Peterson says it this way:
“Everytime someone tells a story well, the gospel is served”

All we have done is tell a story. The story of our son... I have purposely made strides to downplay the God-card. This was simply because all I could do was get in the way with my feeble attempts. God was in the story. He did not need to be exposed.  If you have found yourself drawn to this story and not really knowing why, I humbly propose that my son is only a vehicle to proclaim a story greater than his own.

from 99 balloons

(How shall we learn this unconditional love,

if we do not allow them to be born who ask it of us?)

ht sheepcat

Playwright Arthur Miller's "missing" son

No photograph of him has ever been published, but those who know Daniel Miller say that he resembles his father. Some say it's the nose, others the mischievous glimmer in the eyes when he smiles, but the most telling feature, the one that clearly identifies him as Arthur Miller's son, is his high forehead and identically receding hairline. He is almost 41 now, but it's impossible to say whether his father's friends would notice the resemblance, because the few who have ever seen Daniel have not laid eyes on him since he was a week old.

Suzanna Andrews, writing in Vanity Fair (Sept/07) gives us a fascinating piece on playwright Arthur Miller, and his "deleted" son, Daniel.

...Only a handful of people in the theater knew that Miller had a fourth child. Those who did said nothing, out of respect for his wishes, because, for nearly four decades, Miller had never publicly acknowledged the existence of Daniel.

Daniel Miller lives with Down Syndrome.  He was placed in an institution shortly after birth.

The Denver Post called [Arthur Miller] "the moralist of the past American century," and The New York Times extolled his "fierce belief in man's responsibility to his fellow man—and [in] the self-destruction that followed on his betrayal of that responsibility."

Out of sight, out of mind.

via

A reminder before going to a microphone...

Craig Romkema lives with his family in a log house in the Midwest. He types his poems on a computer, with physical support to stabilize his body.  Craig is a person living with autism and cerebral palsy.  After graduating from high school with honors, Craig spent a year writing, and is now attending college part-time.

Encounter

“Answer!”
I told my mouth
but the message
froze,
while seconds dragged into minutes
and the restless woman
said fast
goodbyes
swiftly dashing
assumptions of
intelligence
behind her.

Words are
power;
speechlessness,
an endless abyss;
garbled speech,
a target for dishonor;
persistent rotten storytelling,
a huge annoyance;
boring tapes that demean my image.

You whose language flows
coherently,
whose ideas sparkle like wine
on the tongue,
remember your gift
and use it well,
for me.

From Craig's collection "Embracing the Sky:  Poems Beyond Disability" .

ps to Dr. Mabuse:  Our Sarah Joy (she'll be 6 next month) lives with Down Syndrome.

National Down Syndrome Conference

We welcome all who are interested in participating in this important event.


If you'd like to be involved, please contact the
Ups & Downs office at
(403) 289-4394
or email
conferencevolunteers2007[at]shaw.ca

Pam's Story: aborting a Down Syndrome baby

Eleven years ago this coming May, I had a “therapeutic” abortion when I was four and a half months pregnant with my only son, a Down’s syndrome baby—James Kent. Well-meaning professionals impressed upon my husband and me how we were rescuing our son—and ourselves—from a life of needless pain and suffering...

Our family doctor told us James Kent would be our shadow for the rest of our lives in choosing to birth him. We didn’t realize my son would be our shadow for the rest of our lives in choosing to abort him.

A short but powerful story, posted here., from the BeNotAfraid site.

BTW, our own family's story is up on that site as well:

In February of 2001 my wife were expecting our second child. We had gone for the usual routine ultrasounds, and were waiting for the standard commentary from our obstetrician. What we heard instead was that the baby appeared to be having some difficulties. There were signs of congestive heart failure. It was explained to us that there were several possible factors which might be causing this. One factor was the possibility of a genetic abnormality. We consented to having an amniocentesis – a genetic test. The results of the test confirmed to a high degree of probability that our second child had Down Syndrome, or Trisomy 21. We were asked if we would like to terminate the pregnancy.

Our first reaction to the news was akin to grief. As parents we want our children to be healthy, happy and we desire them to grow up to lead full lives. We already had a wonderful healthy daughter, and we felt grief that this baby was already suffering from a heart condition in the womb. We felt a sense of confusion - - we were on a steep learning curve: Trisomy 21, Down Syndrome, ASD, VSD. We felt there were so many new terms being thrown at us we hardly had time to digest the information, let alone deal with the reality of it.

We chose to have the baby. It was in some ways an easy decision, and in some ways very difficult. It was easy in that we loved this child – we wanted to be parents, we wanted siblings for our first daughter. And we both felt that our responsibility as parents began when we chose to get pregnant. It was difficult in that we had no romantic illusions about what parenting this child would mean. It would mean sacrifices – physically, emotionally, perhaps financially. What would this child’s future be? Would be caregivers for the rest of our lives? How would this impact our marriage, our family, our careers?

As we look back, a big part of the choice had to do with the difference between love and fear. I work in a major Canadian university with a large teaching hospital. I have many friends in professional fields of health care, education and counseling. As we became more educated about Down Syndrome, and got in contact with people in all of those fields, we began to ease the fear that can easily overwhelm parents of children with disabilities. I am also an ordained Anglican priest – our faith in God is part of our lives and we trust that Jesus and his way of life are part of our decision making. As we look back on that choice between love and fear, we recall the saying from the Christian Scriptures that “perfect love casts out fear”. We believe that God is on to something there: that so many of our important decisions in life have to do with the choice between love and fear. We could choose to love this child (no matter what), or choose to be afraid of the future, of how this person would change and affect our lives. In choosing to have the baby, we did not think God would magically “rescue” us from difficulties now or in the future, but that he would give us the courage to learn how to love more deeply through whatever the future may hold.

Today Sarah Joy is 4 years old; she will be attending the local preschool this fall with her neighbourhood friends. And the journey has been both difficult and rewarding in many ways. Such things can really only be lived, not explained. We have been through surgeries and specialists, developmental and education programs, and we continue to love her through everything. She is a great little sister for Emily, and she is a caring big sister to Adam. She loves music and dance, she loves to garden with us in the back yard, and she loves to go for walks with Grandpa’s dog. She is mischievous in her own way, and often collaborates with her older sister in sneaking treats from the kitchen cupboards. She has taught us something about the difference between love and fear, and continues to live up to her name – she is full of joy, and shares it with those around her.

 

 Update:  Sarah Joy is now 7 and entering Grade 1

The Eyes of Raymond Hu

Raymond Hu is a twenty-one-year-old artist residing in Alamo, CA.  Born with Down syndrome, Raymond graduated from San Ramon Valley High School, Danville, California in summer 1996, where he was enrolled in a full inclusion program for four years. 

Raymond has been studying Chinese brush painting with renowned San Francisco artist Lampo Leong.  He has developed a uniquely free and expressive style of painting that has won much critical acclaim.  In the last few years, he has concentrated on painting animals, ranging from lions to tigers, lizards, elephants, birds, and fish.  He uses photos of animal images as models, but his interpretation is quite unique.  The medium he uses is ink and watercolor applied with round brush on thin absorbant rice-paper.








The British Red Coats

I'm not a saint, just a parent

A few folks have emailed this article to me.  I pass it along to you.  The author writes for the Times, and is a fellow father of a child who lives with Down Syndrome.

By the way, I hope you are not too squeamish. This piece is not going to pull any punches. If you find the idea of love uncomfortable or sentimental or best-not-talked-about or existing only in the midst of a passionate love affair, then you will find problems with what I am writing. I am writing of love not as a matter of grand passions, or as high-falutin’ idealism, or as religion. I am writing about love as the stuff that makes the processes of human life happen: the love that moves the sun and other stars, which is also the love that makes the toast and other snacks. Love is the most humdrum thing in life, the only thing that matters, the thing that is forever beyond the reach of human imagination.

So no, I couldn’t imagine what it was like to live with a child who had Down’s syndrome. I could imagine only the dramatic bits: the difficulties, the people in public places turning away in shock and distaste, the awfulness of a child who couldn’t say his own name.

I could speculate on the horrors of living with a child who could not do a thousand things. I could create a dramatic picture of life with a monster. But I could not imagine what it was like to live with Eddie. You know, from day to day.

That doesn’t make Eddie unique. I couldn’t imagine what it would be like exchanging a childless life for life with Joe. I don’t think anybody can do that sort of thing: it’s not what the human imagination does. You imagine bits that make you proud and bits that make you fearful. You can imagine reading him the Narnia stories, reading his glowing school reports, watching him score the winning goal and hearing the applause after his solo at the school concert. But you lack the machinery for imagining the routine of living with a child who grows up with you.

The fact is that nothing to do with love seems so terribly difficult when you get down to it. Nothing seems an impossible demand on your time, your resources, your patience, your temper, your abilities: not because you connect with your inner saintliness but because you just find yourself getting on with it: muddling through. Most non-parents imagine that they could never change a nappy. Then parenthood happens and they do it. It was the same thing when it came to living with Eddie. It’s just parenthood: everyone who has done it knows it.

So Eddie was born, and I have spent the subsequent five years living with him. Not living with Down’s syndrome: what a ridiculous idea. Living with Eddie.

read it all here

Sarah Joy's "show & tell" for kindergarden this am was "what makes me special?".  She picked her favorite CD to bring along to the class, and said  "I can sing, I can dance, and I can pray"

2006 Buddy Walk

The Edmonton Down Syndrome Society (EDSS) is having its 2nd annual Buddy Walk on November 5, 2006 at Hawrelak Park

Every participant helps promote the importance of understanding, acceptance and awareness of people with Down syndrome. Pledges collected will fund the Down Syndrome Medical Clinic at the new Edmonton Clinic. This clinic will provide dedicated services to people with Down syndrome of all ages.

Walk information:
·         9:30 am: Check-in/Late Registration
·         11:00 am: Walk Begins (2.5km), Followed by Lunch and Prizes

Registration Information:
·         $10 per person (Pre-register, before October 16, 2006)
·         $20 per person (Late registration, after October 16, 2006)                                     
·         Kids 12 and under are free

All registrants (including kids under 12) will get a, Buddy Walk Scarf, refreshments and lunch. The Buddy Walk Scarf will match your Buddy Walk Toque from last year, so be sure to wear your toque!
Please click below for a pdf copy of the registration form, pledge sheet and information brochure.

If you have any questions, or wish to volunteer for the walk please e-mail [email protected] or call our Buddy Walk Hotline at 271-WALK (9255).

more info and forms at EDSS

World Down Syndrome Congress

Lest you forget that there are other conferences happening in Canada this August, let me draw attention to the IX World Down Syndrome Congress being held in Vancouver, from August 22-26.

One of the presenters was over at the house earlier today.  Her particular specialty is early literacy in children with Down Syndrome.

You've come a long way, baby.

the public tragedy of genetic testing & abortion

 In the cities of ancient Greece a public performance of pathos would be staged.  The public tragedy on the stage would somehow cleanse the members of the polis by their participation in the great dramas of human tragedy.  The hubris, the shame, and the cruelty of the fates and gods are held up for public consumption, and the city breathes easy once again.  As if the public performance of tragedy atones for the crime, and restores the citizens to commonweal.  The Sheepcat alerted me to a recent performance, which he also addressed on his blog.  Not everything that needs to be said will be said here and now, but I must begin...

We have returned to our roots.  A story in the Globe and Mail (might be offline in a week or so) recounts the decision of “C. Smyth” and her husband to have an abortion 19 weeks into their pregnancy.  It is a rather sad tale on many levels.  C tells us that she and her husband of 7 years 

“could be perfect parents. We're professionals, with university degrees, own our own house, it's even paid off (we're financially careful yuppies). We're also fit -- we do Ironman events, marathons, play golf, travel and help support my parents.”

So what is wrong with the scene?  It happens that “our 19-week-old miracle is turning out to be tragically flawed.  A dreaded extra chromosome -- a triple X -- has robbed us of a healthy baby.”

“I cry myself to sleep."

Yes, and the agonizing choice you made has also spared you further tears. 

"My husband researches triple X on the computer. We have to decide quickly because it's already 19 weeks into the pregnancy. We don't feel capable of raising a severely disabled child. It would be different if we didn't have a choice, but we do.”

Righteous anger is an easily obtained commodity these days.  Shrill prophets against injustice are a dime a dozen, so forgive me if I play one for a moment.  You did a few minutes of googling and on the basis of that decide what kind of child this will be? Go ahead, everyone, look for yourselves.  Try hitting triple x syndrome on your favorite search engine and see what comes up.  I’m sorry to say this, but I don’t buy it.  To co-opt a phrase from another campaign - this is the 21st Century.  Catch up with the science, the education, the "progress".  University educated?  Professionals?  Urbane and sophisticated?

And then comes the question, which is really a statement: “Isn't it more cruel to bring a child burdened with so many disadvantages into the world?”

Cruel to whom?  To the child? Or to a lifestyle of Ironman events, marathons, travel and golf?   What is it that prevents you from parenting?  You have no strength, no character, no ability to push through the wall?  You have no resources? (“financially careful yuppies”)

I am sorry to say that I don’t trust you.  I suspect that someday the C Smyths will look at my child and ask a similar question:  “isn’t it more cruel to sustain a child burdened with so many disadvantages in the world?”  I know some of you will say it is an unreasonable stretch, but the link is there:  abortion of the flawed and euthanasia of the flawed.  There are no real grounds for making a distinction if you hold that there is truth in C’s “question.”

“We had already decided if it was a Down syndrome baby (one in 30 chance for a mother over 40) we wouldn't continue. I thought even my church-going mother (who goes door-to-door collecting money for those who are anti-abortion, and their pro-life campaign) could forgive that.”

C, let me reassure you of something, that God is always ready to forgive, even when people (including “church going” ones) aren’t.  And I suppose there are few "pro-lifers" out there who know this kind of decision from the inside.  But to forgive is different than to rationalize or accept and say “that’s okay”, and then sweep under the rug. 

“But what about this situation; it's not quite Down syndrome, but it's close.”

To what can I compare this generation?  Why do the prophets rise in selective anger?  I’ll wait for the letters to the editor (although the editor selects which ones will “represent” an alternative view).   But again, why do the prophets rise in selective anger?  I suppose at heart we all have our causes.  Some would (and all should) rise in anger had that sentence read:

“We had already decided if it was a black baby we wouldn't continue.  We knew from genetic testing that our child might be mulatto.  It’s not quite black, but it’s close.”

“We had already decided if it was a gay-gene baby we wouldn't continue.  We knew from genetic testing that our child might not have a high heterosexual drive.  It’s not quite gay, but it’s close.”

I hear you.

“We don't feel capable of raising a severely disabled child”, one that is “tragically flawed”.

And while this might sound harsh, to tell you the truth, I agree.   Who is?  I'm not.  Sometimes the C Smyths of the world are too much into their lifestyle;  they had already imagined their “treasured only child”, their “little athlete”.  In the whole list of qualities for parenthood, they neglected to mention love.

There is so much public tragedy here – this couple had to make a decision, one “too sensitive to share with family or friends”,  yet they are able to bring it to an international stage in a major newspaper.

What are the tragedies here?  That any parent is faced with the brokenness of creation.  It hurts.  I know.  That at such a critical time, they could turn to no one else.  They are alone in this.  And of course, there is the requisite self reproach from and to the Church – why didn’t we connect with these people at some point in their lives?  But if there was ever a case for “lifestyle abortion”, I think C has laid it out before us.

“I hate the sanctimonious people who have made this more difficult than it has to be.  No one begrudges couples thwarting God's plan by spending tens of thousands of dollars on fertility drugs, in vitro treatments, donor eggs, sperm, and surrogate mothers -- they get sympathy. But if you don't want to keep a seriously flawed baby, you bundle your pain in guilt and shame.”

No, it’s not the “sanctimonious” people who have made it more difficult.  It is the people, the people, with genetic disabilities and “tragic flaws” who have made it more difficult.  Sanctimonious persons like myself are only the messengers.  It is their cry of humanity which has made it more difficult for you.  You see, Ms Smyth, they want an answer to the “question” which you posed.   

Unlike other oppressed minorities, they have few self-advocates.  They do not stage demonstrations or run for parliament.  They do not organize media campaigns or engineer public vocabulary.  They do not file human rights complaints or challenge court cases.

And so sometimes the simple but unavoidable diagnosis is left for others to pronounce. 

You do not want me,
because you are selfish,
and you are willing to maintain that selfishness
at my expense.

And that, my friends, is a terminal diagnosis.

When I think of the future for my child and her peers, it is not the rapist, the abuser, or the paedophile whom I fear.  It is the C Smyths of this world, who with their genuine personal tragedy, their understandable choice, deny the humanity of another and openly declare: you are not one of us.   

In the spirit of the tragedies of old, somehow sharing the drama with the polis in a national newspaper eases the pain, atones for the crime, and appeases the gods. 

And of course, the offender is banished from the city.

Photo:

the tragically flawed, cruelly suffering under the burdens of disadvantage

"Down Syndrome & the pressure to abort"

As a follow up to the recent panel discussion in Bioethics 352, here is a timely article that pertains to the discussion.   The article raises some important points.

Down Syndrome & the pressure to abort

From  Elizabeth Schiltz, law professor at the University of St. Thomas:

Prenatal testing has made the population of children with Down syndrome more vulnerable to abortion, because it’s so easy to identify them. But the real problem isn’t the testing.

The real problem is using the results of these tests as part of a crude “cost-benefit” analysis — of balancing the “benefit” of giving birth to a child with Down syndrome against the “cost” to the mother and the broader society….

The issue raised here involves the "commodity" of people.   There are are least two areas that need to be addressed.  First there is the difference between "pro birth" and "pro life".    The former is merely opposed to abortion, while the latter is supportive of, well, the entirety of life.  Economic pressures, unfortunately, do play a part in decisions of these kinds.   Certainly the situation in Canada may be better than the US in terms of affordable medical and other care, but at the same time there are (real or imagined) economic burdens associated with this.   

Secondly, the general language around persons with disability sometimes strays into talking about  "productive members of society".   I want to challenge the assumption that value as a human being, let alone a member of society, is tied to productivity.

HT Dr Kendall Harmon

I've looked at a few other thoughts on this matter over here (against determinism) and over here - where I believe the root spiritual issue is addressed - the choice between love and fear.

genetic testing, Down syndrome & abortion

Things happen in sets of three, don't they? 

Today I received my newsletter from the Edmonton Down Syndrome Society, reminding me that Nov 1-7 is national Down Syndrome Awareness Week.   I also caught a Washington Post article entitled:  The Abortion Debate No One Wants to Have.  It's about abortion based on a diagnosis of Down syndrome.  And an email from a colleague reminding me about a class on biothethics tomorrow, where the topic will be (go ahead and guess).

Now let me speak of some thoughts I wrestle with.  I am the father of a child with Down syndrome.  We knew of the likelihood of this diagnosis because of prenatal testing.  I wrote of that experience earlier.   I find it rather difficult to maintain the notion that we as a society will place value on persons with Down syndrome if it is permissible to have an abortion for no other reason than that Down syndrome is detected before birth.

The author of the article raises some tough questions in her analysis.  To what other identifiable group can we ethically promote such a policy of selective abortion?   "It looks like your son might be born left handed, I suggest you think about terminating the pregnancy".   What would ever happen if a genetic marker were positively identified for sexual orientation?   Would society permit parents to pre-select and abort according to their personal or religious preferences?  "Pastor Billy-Bob, it looks like your son might be born gay, I suggest you think about terminating the pregnancy".   Would there be a public/media reaction to such a scenario?

Tough issues, but they need to be looked at.

I'm just sayin', that's all...