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
Right on, Joe.
Posted by: Tim | July 13, 2006 at 08:35 AM
Your daughter is absolutely beautiful.
God Bless you and your family.
Posted by: Ryan | July 13, 2006 at 11:57 AM
Joe,
Your passionate support of your daughter, and the rights of unborn Down Syndrome children everywhere, inspired me to write my paper for my university class on this topic. The research on this form of eugenics led me down a very troubling garden path where “On the west side of L.A., [children with Down Syndrome] aren't being born anymore” (Bauer, Patricia E.)
May you continue to inspire others to speak for those who have no voice.
Spending time at L'Arche is the best thing I do all week, and the most humbling.
God Bless
Posted by: Sarah Taylor | July 13, 2006 at 03:46 PM
Hi Joe,
I have an 11 year old, autistic son. And I'm not saying there aren't days that I don't scream to Heaven above and ask "WHY? Why me and my family? It's so hard. I can't do this. I'm tired and envious of the families with 'normal' kids!" But I have many more days when I get on my knees and thank God for the GIFT of my son. For the opportunity to love unconditionally. For the chance o glimpse the divine in my son's innocence, purity and love of life. This couple will awake from their slumber one day and then the true nightmare will begin.
Thank you for your eloquent defense of the "tragically flawed."
Nerina Bellinger
P.S. Your daughter radiates pure joy.
Posted by: Nerina | July 13, 2006 at 04:44 PM
God bless you Joe. Thank you.
Posted by: Uncle MacK | July 14, 2006 at 10:32 AM
What a beautiful child! Thank you for sharing it. God bless you and your family.
Posted by: Lynn | July 14, 2006 at 08:50 PM
I had the great priviledge to teach/coach/woo a number of mentally challenged young adults to swim when I was a teenager. What they struggled with in terms of fear of water & the unknown and lack of "logic", they more than made up for in heroic love and steadfast trust in me. I am a better and more faithful person because of the lessons these "little ones" taught me so openly and beautifully. The world would be an uglier and more hateful place without them. I thank God for the gifts of those who in weakness show the abundance of God's grace.
Posted by: Martha G. | July 15, 2006 at 09:05 PM
Amen, Joseph.
I concur.
What a beautiful daughter you have in Sarah Joy.
My next younger brother,just by being the beautiful soul he is and by being the often frustrating and infuriating and exhausting and amazingly gentle and innocent and loving and fragile person he is constantly shows me how tragically flawed I am.
Posted by: Susan | July 15, 2006 at 09:16 PM
It reminds me of this story: http://query.nytimes.com/gst/fullpage.html?sec=health&res=9B07EED6113BF93BA25754C0A9629C8B63.
I still pray for this woman sometimes when I think of it. I'll have to remember C. Smyth now too.
Posted by: Nathan | July 16, 2006 at 07:27 PM
Sorry to double-post but I took you up on the internet research challenge and about 2 minutes of work brought me to the following discussion on webmd.com. It hardly looks like something worthy of a death sentence:
"...Many affected females appear to have no or very few associated symptoms, while others may have various abnormalities.
However, investigators indicate that Triplo X Syndrome is a relatively common cause of learning difficulties, particularly language-based disabilities (e.g., dyslexia), in females. Evidence suggests that affected females typically have normal intelligence with IQs that tend to be lower than that of their brothers and sisters (siblings). Mental retardation rarely occurs. Infants and children with Triplo X Syndrome may tend to have delayed acquisition of certain motor skills and delayed language and speech development.
Affected females often are of tall stature. According to researchers, although sexual development and fertility are usually normal, some may have delayed puberty and/or fertility problems. In addition, in some cases, certain physical abnormalities have been reported, such as a relatively small head, vertical skin folds that may cover the eyes' inner corners (epicanthal folds), and/or other findings."
from http://www.webmd.com/hw/raising_a_family/nord1024.asp
Posted by: Nathan | July 16, 2006 at 07:34 PM
Thanks to all of you for your input. As as Nathan reminded us, we need to be in prayer.
Posted by: joseph | July 16, 2006 at 10:52 PM
I don't know when I've ever read such a moving and powerful blog post. Thank you.
Posted by: Mr Grumpy | July 17, 2006 at 03:19 AM
Wow! This really hurts my heart Joe. Thanks for sharing.
Posted by: Chuck | July 17, 2006 at 01:36 PM
Thank you Joe, that was beautiful.
God bless!
Posted by: Rita | July 18, 2006 at 12:19 PM
A thousand THANK YOUs from the bottom of my heart.
Posted by: Cynthia Yunke | July 25, 2006 at 07:14 AM
Interesting note. Like all things in this world, there's always (at least) two sides. If someone opts to terminate a pregnancy for a genetic or developmental defect (that will cause mental and/or physical issues), that is a valid and legal choice. If they opt to continue a pregnancy with the foreknowledge of said issues, that is also a valid and legal choice. For those who read and quote the Bible, it is obviously NOT our place as mere human beings to judge other humans' choices. In cases of termination for Down syndrome, Turner's, or others that are assumed to be non-lethal...it's not a simple "snap" decision. Parents struggle and research thorougly prior to making such an important choice on behalf of their unborn babies. Perhaps it's not so much the infancy and childhood years that concern them (if their kids are lucky enough to forego G-tubes, open heart surgeries, bowel surgeries, medications galore, etc.). It's the teen years and beyond when their "adult" children are still functioning in the pre-school or grade school level. Yes, love is a given....but is that truly fair to the CHILD? Maybe s/he will be one of the fortunate ones that actually can make it through high school and technical college. Despite all of the early intervention that special-needs children have been getting for quite some time now, it still appears as though some will "succeed" and become somewhat independent, the majority will not.
This isn't about wanting only a perfect child, or being embarrassed of a mentally challenged offspring. It's not about "playing God" (as any medical interventions after birth can also be defined in the same way). It IS about taking a look at the BIG picture and making a decision out of love...NOT selfishness or ignorance. As much as others don't want to accept this fact, it is VERY true. It is done out of the deepest parental love (and is anything BUT selfish). I'm sure it's difficult for those with opposite views to understand; but, nothing could be more true.
In the end....just as parents whose children are living with T21 hope others will open their hearts to acceptance, those who feel they made a loving choice on behalf of their angel babies hope for the same acceptance and respect in kind. I trust that is the case with those here as well. Have a blessed day.
Posted by: Mommy of an angel with T21 | July 25, 2006 at 10:14 AM
I think the original newspaper article in question raises at least two related points. The first is the sweeping generalization about persons living with disabilities due to genetic defects. Throughout the article, the author refers quite negatively to all persons with genetic defects, and makes a blanket statement about quality of life of those already living. That is a different, though related, question to the topic of abortion based on genetic testing.
Second, the author did not make any claims, such as Mommy of an angel has done in a very graceful way. The author claims it was in fact a snap decision, with very little research done into triple x syndrome. The main qualities of parenthood describes seemed to be all financial, lifestyle and "success" oriented - what I might consider to be the opposite of the values which Jesus taught. As nathan pointed out in his comment - those who take the challenge and do the exact research process which the author claims she and her husband did, will find that triple x hardly constitutes the abysmal quality of life which C Smyth claims. The article does a rhetorical shift - from speaking of triple x syndrome to speaking of Down syndrome - and I'm sure the editors of the G & M are smart enough to recognize that rhetorical shift.
I'm sure that issues like this take on a different tone in an American vs Canadian context. I'm not even going to attempt to disentangle that. Socialized medical care in Canada makes an enormous difference. Heck, after our daughter's open heart surgery, they asked us if we needed to be reimbursed for parking.
I think when a public forum is used (the Globe and Mail is considered by some to be our "national newspaper") to forward ideas, those ideas are fair game for comment. Judging, in the sense of discerning the underlying truths of something, is a necessary part of the Christian life. We do it every time we participate in public life - and I grant that there are Christians of all political stripes.
The worldview expressed in the article was one of harsh determinism (we know what the future will be like for this child), unabashed materialism, and negative judgment on quality of life upon those already living. Love was the one quality which (even the one word) which did not come up in the article.
blessings
ps - the original article appeared in the section header "Facts & Arguments"
Posted by: joseph | July 25, 2006 at 03:00 PM
Oh thank you, thank you for this. You put words to what is in my heart. I, too, am afraid of the C Smyths of the world.
Posted by: jennifer graf groneberg | July 25, 2006 at 04:50 PM
Thank you, Joseph. Very well said. I cannot venture to speak for C. Smyth, as I do not know her. However, I can see how her verbiage can be translated as harsh and cold. I truly hope that love played a part in her choice. I know that it most certainly did in ours (and the many other parents who have "walked a mile in our shoes").
I wish only the best to all, no matter on which path life has taken them.
Posted by: Mommy of an angel with T21 | July 25, 2006 at 06:57 PM
Topics like this are so "loaded" that it is sometimes (okay - very often) difficult to have a discussion at all. I hope and pray God blesses you in all you do, MoaAt21.
Posted by: joseph | July 25, 2006 at 08:48 PM
32 years ago a pair of parents who couldn't conceive finally got their call (after 7 years on a waiting list) from Ontario Children's Aid: "We've got a baby girl for you." A 19 year old unwed university student chose not to terminate her unwanted pregnancy. I'm sure glad she did!
I came with all the "right" chromosomes, etc. - but not without tragic flaws. I've never met anyone without them (except perhaps that birth mum who made gave such a beautiful and loving gift!)
Posted by: Lisa Barrowclough | September 05, 2006 at 04:18 PM
Beautiful letter, Joe, and what a cutie in the picture at the bottom! God bless all us parents with "tragically flawed" children whom we love beyond reason!
Posted by: Tragic Christian | October 09, 2006 at 01:22 AM
beautiful text
thank you
Posted by: maria bottis | April 05, 2007 at 10:15 AM
She is so beautiful and looks so happy :0)
Posted by: patty | August 12, 2011 at 09:50 AM