felix hominum

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.