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 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.
Did you hear about the graphic anti-abortion ads airing in D.C.?
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.
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.
I’m going to go out on a limb today and say something that a good portion of my readership probably won’t like. Namely: I support Obama’s health care plan.
You might remember that last year a group of us put together a bill to mandate coverage of “habilitative” services for children with special needs. This extremely frustrating process has shifted me from a default status of “big government=bad” to support of national health care.
- A child who has a stroke on the birthing table will receive whatever therapies s/he needs throughout his/her life. But a child who has a stroke in utero, even a day or two before labor begins, will be denied the same coverage.
- Likewise, if Alex (Heaven forbid) suffered a fall and received brain damage that made it necessary for him to receive ongoing physical, occupational, or speech therapy, he’d get it. But Julianna, who already faces an uphill battle for learning anything (aside from being cute, which she gets naturally 🙂 ), gets denied based on her diagnosis of Down’s.
As long as we were covered by First Steps, we got what we needed. It is a great program. But it only goes to age 3—and Julianna didn’t even walk until 2 ½. For 2 ½ years, we threw all our effort behind the basic gross motor skills, with OT and speech taking second place. This is the natural order of learning. But by the time she walked, we had less than six months to focus on speech therapy. Six months, when it took 2 ½ years to teach her to walk.
At 3 ½, she receives one hour a week of one-on-one speech therapy from the public schools. And although her comprehension is within twelve months of normal, she’s not even as far along as Nicholas (16 mo.) in speech production. She doesn’t know how to control her muscles. She can’t even babble the back of the mouth sounds (k, g, etc.) The only solution is speech therapy, and a lot of it. Can the school give her more? Probably. We’re certainly going to ask, come fall. But through insurance, we’re just plain old out of luck, because she has a pre-existing condition—namely, Down syndrome.
And we have good insurance. Insurance that served us well, as long as we had somebody else providing therapy.
This is the inequity—dare I say, the discrimination—that the Children’s Therapy Act seeks to address. But even knowing that grassroots-level legislation takes years to get passed, the complete and total lack of responsiveness from the political leadership was disheartening, to say the least. For weeks on end, we deluged the speaker’s office with calls to assign the bill to committee. We called senators, trying to get someone to listen to us. No response.
I contacted a former state senator, hoping for advice on who might be open to listening to us. Instead, I heard how insurance is not supposed to cover ongoing needs; insurance is supposed to be for short-term, emergency care, and we should not be putting mandates on private companies. I wanted to strangle him. Political philosophy is all well and good, but not when it holds us hostage. Because folks, there is not another good option.
A health insurance company can negotiate a rate with providers. A family can’t. It’s not because the therapists are unwilling; it’s just not allowed. That means that where an insurance company pays a fraction of the fee, families pay the whole freaking thing. Every time.
We know of people who have sold their homes to pay for therapy. People who have turned down good jobs, preferring to stay in low-paying ones, because Medicare does cover therapies. People who have gone into debt to meet their child’s needs.
How is this just?
This is why I put my support behind federal health care. Because as of 2014, it requires that insurers provide coverage equally across the board, regardless of “pre-existing condition.”
Now, I know the arguments. High taxes, socialized medicine, general governmental incompetence. I get it. I do. I’ve heard from people who lived in Canada and loathed the system, saying it was absolutely useless. But I’ve also heard from people who lived in Canada and said it was fabulous. Likewise for people in Europe, who come here and are appalled by our for-profit health care system. No system is perfect; somebody’s always going to be upset. But I truly, honestly believe that most of the backlash against “Obamacare” is about political power and fear of change.
What about abortion? Well, here’s the thing. Abortion, horrific and loathsome as it is, is not going to be legislated away. Not now, anyway. We as pro-life Christians would be far better employed changing hearts and minds than banging on a door that simply cannot be broken down right now. Through Theology of the Body, through natural family planning, through support of unwed mothers, we can change the world. Because where hearts and minds are, laws will follow.
One final thought. Parents given a diagnosis of Down syndrome during pregnancy are presented with a world where their child will be discriminated against every day. If parents can’t even trust their health insurance to help them get needed care for their child, how can we be surprised by a 90% abortion rate?
“Is it not possible for us to do with gender, sexuality, and reproduction what was long ago done with the stars? To realize that these are also secular areas…?”
So says Anne Rice in the conclusion to her book, Called Out of Darkness, her memoir about her flight from and return to Catholicism. She’s talking about the discovery that the earth revolved around the sun, and lamenting the Church’s consistent position on sexual issues.
It’s a common criticism, that Christians in general and the Catholic Church in particular are obsessed with matters of sex. Not that long ago, a man I know commented on “Life-Giving Love in an Age of Technology,” a pastoral letter recently approved by the U.S. bishops. His comment went something like: “Oh, so they’ve run out of poor and hungry to care for, so now they have to spend their time on THIS?”
Such arguments miss the point. It’s not either/or. It’s both/and—and anyone with a fair mind must admit, the Church does speak often and pointedly on many issues, striking across the political spectrum: war, health care, poverty, and yes, sexuality.
Painting sex as a secular issue rings false because our sexuality is the very core of our being. Who we are, how we look at the world—these are intimately connected with male, female, heterosexual, homosexual, etc. Abortion is high on the Church’s priority list not because the evil patriarchal bozos want to put “laws on my body,” as the bumper sticker says, but because there’s another body to be considered. Abortion is not about one woman’s body; it’s about two bodies, one nourishing the other. How can we see the heart beating beneath the woman’s ribs—that unique life, with its own DNA, its own blood type—and claim that it is a part of the mother, and can thus be disposed of?
And this is also why contraception gets such air play from the bishops—because hormonal birth control, at least, acts by multiple mechanisms, one of which is the hardening and thinning of the uterine lining, which makes it nearly impossible for the child to implant. (See here and here.)
No one wants to talk about this, because nobody wants to know how often that third function of hormonal birth control comes into play. If pro-life people had to confront this reality, it would force them to change. It’s easier to say, “Oh, it doesn’t happen often enough to worry about.”
In a broader sense, nobody wants to confront the fact that sex has a biological purpose, and mucking with that purpose is fraught with perils, both emotional and physical. I think everybody realizes that casual hookups are damaging to a person’s sense of trust in permanence. But the only way you can know you’re in a permanent relationship is to wait till marriage…and to view marriage as indissoluble.
The Gospel has always been at odds with the culture—in Biblical times no less than today. It’s easy to corrupt religion, I’ll grant, but when you take a thoughtful, balanced look at the Gospels—the languages, the cultures, the context—the implications spin out far beyond the actual words written in Scriptures. I can only skim the surface in a blog post; I’ve started and discarded four or five other related topics. Which just goes to illustrate that sexuality is intimately connected with matters of faith. Sorry, Anne. It’s not going anywhere.
As I write this morning, Alex is sitting beside me playing the electronic keyboard. All music is about something to him—I cannot convince him that some music is “music for the sake of music”—so as I type I’m receiving a narration, which I hope you’ll forgive.
(Down in the bass range): “Mommy, this song is about a superhero.
And when I play down here, it’s because he got tied up by the bad
On Monday we went to the Cathedral, where I played piano for Mass for the diocesan teachers. As we were walking out, we passed a series of picture boards with photos of fetal development.
(Upper range of the keyboard): “And now he’s got the key.”
They were beautiful pictures, displayed for Respect Life Month. All things about babies in mommies’ tummies are very interesting to Alex, so I walked him through them from start to finish.
(Around Middle C): “And now he’s got himself out.”
“Mommy, why are there pictures of babies in mommies tummies in the church?” he asked as we walked across the parking lot, headed for the playground across the street. Oh, dear, I thought. “Well, hmm,” I said. “Let me think how to explain this.” One of my earliest memories is of my mom trying to explain abortion to me. It was slightly traumatic—there is no way to make it even remotely comprehensible to a child that someone would deliberately kill a baby—so I want to attempt to ease him into understanding over the course of a few years.
(Lots of banging): “And now he’s locked the BAD GUYS up, because he
still had the key!”
But Alex saved me the trouble. “Wait, don’t tell me, I know!” he said.
“Oh, you do?”
“Yes.” He opened and closed his mouth a few times as he tried to gather his thoughts, and then he said, “It’s because this is a church for babies in their mommies’ tummies, too.”
It was one of those moments when a mother truly understands that we must be like a child to enter the Kingdom.
“And everybody’s cheering because he defeated the bad guys!”
Julianna’s news is that she is digging in her heels and fighting with her speech therapist, who thinks that if we accomplish nothing else between now and the age of three, our time will be well spent in fighting the battle to teach her structure. In other words: we will do this now, whether you want to or not. A lesson that a three-year-old will need to have to succeed in Early Childhood Special Ed.
It’s hard to chide her, because there’s still so much of the sweet baby in her. We know we need to scold, to put our foot down, to make her behave as we made Alex behave, but one goofy grin from her, and we’re turning away to hide our smiles. It happened with Alex, too, but it’s harder because this stage is lasting so much longer. She’s even funny when she’s in trouble. She puts her chin down, and her lower lip pulses in and out. Then she flutters her long lashes as she steals glances to see how her adorable-ness is playing with the crowd. Sigh.
In other news, she is teaching us, by way of varied and escalating nastiness, that we cannot leave her unattended on the toilet—even for a couple of minutes to deal with some other child. (Christian hates it when I include details like that, but this blog is also a family history, and such things are important for parents to remember. But I’ll leave it at that.)
You’d never guess it, looking at her, would you? It must be instinctive to small children: subversive behavior that we don’t expect, because on the surface, they look so sweet.