Jonah, Marines, and prenatal diagnosis

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Jonah Cast Forth By The Whale, by Gustave Doré.

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Jonah had a really bad attitude. God gave him a job he didn’t want to do– the people of Nineveh weren’t worth his trouble–so he took off in the opposite direction, only to find himself stuck in the belly of a fish. When he proved indigestible (how lucky for him he was spit out near shore!), he did as he was told…but he did it with bad grace. The people of Nineveh repented, and God spared them.

Jonah should have been ecstatic. Who gets that kind of chance to change the world? Instead, he pouted because he thought God had made him look stupid. So he went into the desert to die. When his shade tree died, he threw a little hissy fit, and God said, “How can you get so upset over the death of this little plant, and simultaneously be completely insensitive to the deaths of the people of an entire city?”

This is the story our associate pastor told in the homily yesterday. It reminded me of a column from our diocesan newspaper this week, addressing the story about the Marines who urinated on the bodies of dead Taliban members. I won’t share it all because I don’t have permission, but this part really stopped me in my tracks:

“The irony is so great that we don’t get it. A sterile liquid produced by the kidney and streamed onto a cadaver is morally debated, but the hail of bullets that penetrated those bodies, making inanimate what was only minutes before a breathing, sentient being, does not enter the discourse. War gets reduced to an etiquette that shows more respect for the dead than the living.”

Christian and I spent Saturday morning at a training session to learn how to talk to parents receiving a diagnosis of Down syndrome–part of our local effort to start a hospital visitation program. Right now, the presenter told us, most people are being “surprised in the delivery room.” But very soon the paradigm will shift to almost exclusively prenatal diagnoses, because of the new tests. She reiterated that the Down Syndrome Guild is “pro-information,” not “pro-life,” a position I have always thought was untenable–how can you advocate for people without taking a stand that they are inherently worth taking a stand for?

But as the morning progressed, I began to see the wisdom, or at least the necessity, of such a position. If we come out all guns blazing, laying down a blanket “law” via a prolife message, we will never get the opportunity to witness at all; people will never let us near them, because they will know that we are more about our soapbox than we are about helping them. The fact is that abortion is an option, whether we like it or not. If we hope to be credible witnesses, we have to acknowledge that, and say “Look, we know what you’ve heard about Down’s is scary. Here’s the part the doctors can’t tell you”–without trying to “guilt” people into proper behavior at a time when they’re wounded and bewildered. If we can’t do that, then we can’t be trusted to have a family’s best interest at heart, and we have no right to be doing this work at all.

Sometimes we get so focused on the unborn child that we forget the wounded parents before us. And that’s why I bring it up in connection with Jonah and the dead Taliban. We must respect the dignity of every person–even when they are considering an action we find morally reprehensible–even when the dignity of another life is at stake. The risk to the baby’s life does not negate our responsibility to respect the parent as well.

I don’t have my thoughts all in order on this topic yet; I can’t help feeling there are holes in my logic that I haven’t yet identified. So I’ll be interested to see your thoughts.

Prenatal Diagnosis and Abortion: What We Can Do About It

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I’ve talked before about how I view prolife work, but today I have the honor of guest posting over at The Practicing Catholic on the topic. I believe that if we find the statistics about prenatal diagnosis and abortion apalling, we have to change the culture that almost guarantees such a high rate. But we don’t do that by arguing hot-button political issue/s–we do that by changing ourselves–by making contacts and interactions with the disabled population, for us and for our children. I hope you’ll take the time to visit and read, because this is so important!

A Post For All Who Call Themselves Prolife

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A year and a half ago, I was working on legislation to ensure that children with disabilities weren’t denied therapies because of their disability. Our sponsor (my mom) was approaching her term limit, and we needed a new one. We knew we had to find a Republican, because the legislature is Republican-controlled. We also knew that putting mandates on insurers could be a tough sell. Still, we felt sure people on both sides of the aisle would recognize that this issue was bigger than political philosophy.

I contacted a former Republican state senator who was well-connected and reportedly supportive on disability issues. I told him what we were hoping to accomplish, and asked him to suggest people to approach as sponsors.

His reply raised my blood pressure for weeks afterward. (Eventually, its presence in my inbox became such an open sore that I had to just delete it. Just thinking about it still gets me going.) However he intended it, it came across as condescending: a man clearly much wiser than this do-gooder little girl, and determined to teach me the error of my ways. His philosophy went something like this:

Insurance is not meant for ordinary care. It’s meant for emergencies, for extraordinary circumstances, cataclysmic events you can’t anticipate. Therapy is normal, ongoing care for kids with special needs; thus, insurers shouldn’t have to pay for it unless they want to. And the government certainly shouldn’t be putting a mandate on them. It’s the responsibility of the families to provide for their children what they think is important. He understood how tough this was for families to accept, but nonetheless that was the way it was.

I’m sure you can appreciate why I hit the roof when I read this email. Never mind that raising a child with special needs is extraordinary circumstances and something you often can’t anticipate. I had the good sense not to respond at all, because there wasn’t one polite thing I could have said. But believe me, I’ve composed many, many responses in my mind. And the more time passes, the more convinced I am of the grave flaw in his argument.

Because this man calls himself prolife—by which he means that he believes abortion is wrong. But respect for life is so much bigger than abortion. It’s an attitude that should permeate all of life, in all its forms and manifestations. Prolife politicians are very good at being outraged by the systematic termination of “imperfect” children. But if you’re going to ask people to shoulder the responsibility of caring for children with disabilities, you can’t abandon them once the child is born.

Missouri has a great program called First Steps, which provides these services. But in rural areas, it’s hard to find providers to come to the home. And First Steps ends at age three, after which kids enter the school system. We’re lucky—we have a great early childhood program where I live. But we’re in an urban area. What about families in small towns without the resources to provide for kids through the schools?

When I was serving on the Children’s Therapy Act committee, we heard stories of people who had to sell their homes to pay for their kids’ treatment, people who deliberately stayed in low-paying jobs so that they would qualify for Medicaid, which does cover these therapies.

How dare politicians stand on a soapbox, claiming that all life is precious, that children with disabilities have a right to live, and then turn their backs on families who actually have them? Do they not realize that, unlike insurance companies, parents can’t negotiate reduced rates? Do they not realize how crippling the expense of therapy becomes? Or do they just not care?

Political philosophy is all well and good, but it cannot be so rigid that it leaves behind those it purports to serve. I happen to think that minimizing regulations is a sound principle—within reason. But the reality is that power companies aren’t going to implement environmental reform if it’s going to cost them money. CEOs aren’t going to give up their huge bonuses just because the economy’s rough on the little guy. Some things MUST be mandated, or they won’t happen at all.

Doesn’t it make more sense to get these kids the treatment they need to become productive, (tax-paying) members of society? And if we don’t, if we shove the disabled population into a corner, behind a wall where their lack of function doesn’t make everyone else uncomfortable—if we don’t show them the respect they are due as human beings by providing them the tools necessary to integrate into society—then how can we be horrified and outraged by the eugenics of aborting the “imperfect”?

I share this example today in the hope that it will open people’s eyes to the many ways besides abortion in which life is disrespected. We’re accustomed to hearing about certain issues: death penalty, abstinence education, end-of-life issues—but respect for life is everywhere, all the time, in every single issue we face as voters. As we head into an election cycle, I beg you: challenge your candidates to man up and be consistent. If you’re going to respect life, you have to respect life in all its forms.

Responding to the un-answerable comment

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That look (Downs syndrome)

Image by Andreas-photography via Flickr

On Monday morning after Christmas, I found this comment, on an earlier blog post, from “Greg” in my email inbox (all mistakes his):

Will human stupidity know no bounds?
YOU chose to have a disabled baby.
YOU chose to not have an abortion
YOU decided to raise it.

Now you expect insurance to pay for your mistakes?

Why should everyone bbe burdened by your decision? If insurance pays for all the disabled child needs, then that means everyone else has to pay a higher insurance rate to offset the costs.

Would u be ok for an insurance company to pay for physical therapy on a guy who was constantly jumping and falling flat on his back even AFTER he was warned by doctors that it is very unhealhy?

Case closed

*

I’m having trouble imagining what kind of person could write this email. There seems to be a hostility beyond reason in his argument. Some among my friends, perhaps wiser than me, have suggested that the better course of action is to ignore it, as “Greg” is either desperate for any kind of attention or so closed-minded that persuasion is futile.

File:Polio physical therapy.jpgIndeed, I’ve found it harder to respond than I initially expected. All my power of reason is based on a certain set of ethical standards, which I thought were fairly universal, even if people apply them in different ways. For example, even those who think that it’s okay to terminate an “imperfect” pregnancy tend to be passionate about treating the disabled population with the respect and dignity due to all human beings. There is a commonality of values here, and my job is to illuminate the inconsistency in the way they apply it.

This comment shows no such commonality. How do I respond to someone who shows no sense of the innate dignity of the human person? Frankly, the warped perspective makes me suspect the whole thing is a prank.

Nonetheless, here’s an attempt at finding common ground with this commenter (which response will also be emailed to him following posting):

First: Despite the widespread use of prenatal screenings, not every child with Down’s (or any other condition) can be identified in utero. Even prenatal screenings aren’t foolproof. We did not know our daughter had Down’s until two hours after she was born. It wouldn’t have made any difference, anyway, but the fact is that your entire argument is based on a prenatal “choice” that many people don’t even have.

Second: by your logic, insurance shouldn’t be required to pay for any ongoing condition that could have been avoided–including many conditions and diseases that are not disability-related. Diabetes, even cancer–these things frequently have a genetic component (like Down’s), but they also tend to come on when people chronically mistreat their bodies (smoking, poor eating habits). Are you going to deny them coverage, too, because it’s “their own fault”?

But most importantly, you are proceeding from a set of faulty assumptions: first, that a person with a disability is an “it,” not a “he” or a “she;” and second, that “choosing” to raise the child, who is a visible sign of my husband’s and my love for each other, is a “mistake.” I have trouble imagining that anyone who has taken time to get to know a person with a disability could make this argument. Because once you open your mind and heart to an individual, you find that they are just that: an individual, unique and precious, with their own strengths and weaknesses. It’s just as ludicrous to reduce a person to the sum of their devlopmental delays as it would be to reduce a contact lens wearer to the label “near-sighted.”

Human relationships are not measured by what you get out of them, but by what they inspire in you: the best or the worst of the human spirit. If you reserve your love only for those who are “perfect”, you condemn yourself to loneliness–because no one will ever meet that criteria. We all have warts. Big ones. Some of them are just more obvious than others. But the hidden warts, the ones no one knows about, can do more damage to others than an extra chromosome ever could.

Is this off the topic of insurance coverage? You bet. But how can we discuss what should or shouldn’t be covered before addressing the basic dignity of a human being? Without that, the debate is meaningless.

Are graphic abortion ads justified?

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Did you hear about the graphic anti-abortion ads airing in D.C.?

A 3D ultrasound of Alex at 20 weeks

I don’t know what I think of this, to be honest. It’s inflammatory, and generally speaking I think inflammatory is bad. But on the other hand, this woman has virtually zero chance of actually being elected, and she knows it.  She’s doing it solely to draw attention to the issue. And I have to give her credit for that.

Here’s the thing. If abortion is the sanitary, morally-neutral act that pro-choice advocates want us to believe it is, then why the horror at the images? The simplest explanation is that the images are horrifying, and that they force us to confront the inconvenient reality that if the image of the act is horrifying, maybe the act itself is horrifying, too.

The thing I have never understood about this debate is how it’s all about the woman. Take away abortion, and women would still have choices; unborn children don’t. Leaving aside the issue of rape for the moment, women have the choice to have sex or not have to have sex. Women can also choose to carry a baby to term and give it a life with adoptive parents; they aren’t chained to the care and feeding of a child for life.

Yes, that is a huge thing to ask of a woman; as a woman who has borne three babies, I am well aware what I am asking physically, and I’m smart enough to be able to imagine the emotional and social impact of it as well. I understand the impulse to circle the wagons, the desire not to expose oneself to people’s nosy, judgmental comments and looks, not to mention the agony of giving away a child you’ve nurtured in your womb. But a woman in this situation has a unique opportunity to make the world a better place–to take a difficult situation and bring something good out of it by easing someone else’s pain of infertility. It’s a gift she, and only she, can give, not only to couples desperate for children, but also to her child who is, after all, blood of her blood and flesh of her flesh, even if the timing is all wrong.

So yes, women have choices–with or without abortion. But for some reason, nobody’s talking about this. All I can think is that the idea of our own comfort and convenience has become so ingrained, and the concept of abortion so politicized and removed from reality, that people don’t even recognize the horror of the act anymore. In which case, ads like the ones in D.C. might be justified. Maybe. Maybe we need to be shocked out of our comfortable, convenient prison. Maybe we need to be reminded that choices do have consequences, and that to pretend otherwise is to diminish the richness of human experience.

Emotions run high on this issue, and the usual tenor of “discussion” on it only increases the rancor. I have no idea if this post will spark comments from my usual crowd of friends who agree with me, or if it will show up in search engines and bring me hordes of people who believe that abortion is morally acceptable, or at least morally neutral. Either way, I ask that when you comment on this post (which I hope you will), you do so in charity and with reason.

7 Quick Takes, vol. 102

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We took an overnight trip to the Lake of the Ozarks last weekend. Christian had a piano gig, so I set about putting the kids to bed by myself…in a hotel room at the end of a two-hour drive. Let me say this. You’ve heard (and used, no doubt) the phrase “bouncing off the walls.” We all know what it means, but I didn’t realize it literally could happen. I knew Alex was excited, so I tried hard to bite my tongue, but it was so hard! The little ones sat on the bed with me reading books and getting distracted as their big brother rolled over one bed, flying leapt onto the other, rolled over it, smacked into the outer wall, and came back to do it all in reverse.

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With that in mind, just guess how well we all slept. Yup, you guessed it. Sleeping with children at the hotel has dropped about twenty places on Mommy and Daddy’s priority list as the kids get older. Christian slept badly because Julianna’s bottom was going up and down all night (so he claims) and Alex repeatedly decided that he prefers to sleep diagonally across the bed. Somehow I kept waking up with five-year-old feet three inches from my face.

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The next afternoon, we went miniature golfing at Pirates Cove. They have lovely little waterfalls and ponds there (though I must admit the blue-dyed water is a little creepy), and since no one slept well, the little ones were hard to handle. They kept stealing balls from the green, trying to walk across distinctly non-child-safe rope bridges, and sitting down in the middle of the fairway. One ball skipped the edge of the green and began rolling down the grass toward the pond. “Better catch that before it goes in the water,” Christian told Alex, who hurriedly grabbed it….just before Julianna (or was it Nicholas?) nonchalantly chucked my ball right into the water.

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It’s Down Syndrome Awareness month, and although I’m not posting every day, as some are, I have found myself with a lot to say on the subject. I followed a link the other day to Amy Julia Becker’s post on the NY Times parenting blog. Becker is a good advocate for special needs, but I made the mistake of reading the first 25 comments. It was appalling to find that without exception, the hostile-to-DS, pro-choice comments received at least double, and sometimes three times as many reader “recommendations” as those affirming the message that people with special needs are valuable, too. But this comment, at #14, was the one that broke my heart:

I grew up with a sibling with Down Syndrome. We are now both over 50 years of age. With the passing of our parents, guess who is responsible for him now? How nice for Amy Julia Becker that she has the money, time and support to take the risk of having another child with Downs! But William will be left holding the bag for one or both his siblings after Amy is long gone. Let’s hope he feels as “privileged” then as she does now.

The bitterness in that response makes my stomach turn. Literally. I get queasy reading it again. Can you imagine what this person’s poor brother must have to tolerate from his sibling, who should be loving him unconditionally? Please God, my children will never, NEVER approach Julianna with such heartless rancor!

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On a related, but happier note, someone directed me to the Little Sisters of the Lamb, an order of religious women in France who welcome women with mental disabilities. WOW. I mean…WOW. If only they weren’t six thousand miles away and speaking another language!

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In the “You guys are seriously too on the ball” category: We ordered our photo Christmas cards last night. :) Don’t worry, we’ll leave something else till the last minute to make up for it.

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Advent is getting closer all the time. Have you started thinking about how you will balance the busy-ness and the sacred yet?

Have a happy Friday!

7 quick takes sm1 7 Quick Takes Friday (vol. 102)

Because They’re Worth It

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How do I write what I’m feeling without passing judgment?

On the first read-through, I thought the baby had died in utero. He wrote it to be intentionally vague, until the middle of his essay, when he says that the nuchal fold screening was what caused all the problems the first time around. And suddenly, sitting on the couch on a Monday evening, trying to catch up on reading, my body electrifies with a silent howl of anguish, and anger, and blinding pain. Because I know what a nuchal fold screening is all about.

I try to tell myself that I don’t know that his baby had Downs. That I don’t really know that the nuchal fold screening is solely a test for Trisomy 21; that it could test for other things, too, that just aren’t on our radar—which, when I get on the computer this morning, indeed turns out to be the case—but it doesn’t change the essential point. The essential point being that some great conglomerate out there decided that “imperfect” children don’t deserve to live whatever life span they would be given. That their “imperfection” is a burden that people shouldn’t have to put up with. That there are no lessons to be learned, no richness to be savored, in an “imperfect” child. And that 90% of the population has bought into the propaganda.

Even organizations like the National DS Congress refuse to counter the propaganda. They don’t want to offend anybody, so they won’t say, “Hey, it’s wrong to abort a baby just because she has Down’s.” Can you imagine? An organization whose sole raison d’etre is to support and improve life for those with Down’s can’t go any farther than to say, “Let’s give people all the information, but we’re not going to take a position on aborting kids with Down’s.” It undermines all their work to refuse to take a position that these kids are intrinsically worth keeping.

October is Down Syndrome Awareness Month—an observance that gets obscured by Breast Cancer Awareness Month. It’s hard for me not to be a bit jaded about this; it’s not that breast cancer awareness isn’t important—it is—but cancer is on everybody’s radar. We don’t need “awareness” of this issue nearly as much as we need awareness of the issues related to special needs. The culture keeps spinning around the same whirlpool, and with every revolution, the special needs population becomes smaller and more marginalized. I have no doubt that if autism could be predicted in utero, the same 90% abortion rate would follow.

And yet those of us who live with special needs know, as the rest of you simply cannot, that these lives are eminently worth living. Even children with the most severe genetic disorders—the ones that result in early death—have moments of beauty to teach those around them. The more we segregate ourselves from the disabled population, the poorer our human experience becomes.

I’m grateful, then, to those few who make an effort to bring the special needs population back from the margins. HBO is honoring DS Awareness Month with a documentary called Monica & David, about a couple with DS, madly in love, who choose to get married. It premieres on Thursday night (Oct. 14th at 8 Eastern). For those here locally, the same film is playing at the Citizen Jane Film Festival this Saturday, the 16th at 7:15p.m. (central).

Why am I offering advertisements? Because I know full well that this is something people just don’t really care about unless their lives are touched directly. As we circle that whirlpool of shrinking disabled population, we keep getting closer and closer to the point where hardly anybody will be touched directly. And the world will be more desolate for it.