Thoughts, essays, and writings on Liberty. Written by the heirs of Patrick Henry.

February 20, 2012

Should We Force Women To Bear Disabled Children?

by Brad Warbiany

Rick Santorum believes that the Obama administration is in favor of some Gattaca-like dystopia, I suppose:

“One of the things that you don’t know about ObamaCare in one of the mandates is they require free prenatal testing,” Santorum began telling about 400 people here. “Why? Because free prenatal testing ends up in more abortions and, therefore, less care that has to be done, because we cull the ranks of the disabled in our society. That too is part of ObamaCare — another hidden message as to what president Obama thinks of those who are less able than the elites who want to govern our country.”

Now, I’m in a weird position to discuss this, because I’m a bit of a pro-life libertarian, but at the same time I’m very libertarian about being pro-life. I think when it comes to my wife and I, I’m very strongly pro-life. But that said, I’m not sure I’m strong enough in the belief in being pro-life that I’d throw a woman or a doctor in a cage for aborting a pregnancy.

My wife and I have two kids, are expecting a third. For the first two, we deliberately declined the amniocentesis because we were willing to bear the child regardless of the results. It seemed that sticking a needle into my wife’s uterus is probably a silly risk to take [despite being a low-risk procedure] when we had no intention of letting the results change our behavior. With the third, it appears that medical technology has advanced to the point now where a blood test & ultrasound can now determine if there’s any major risk-factors, and luckily the results to date are that rather than being a 1 in 200 chance of having a baby with Down’s Syndrome, we’re happy to say that the odds are 1 in 11,000. It is nice to know that.

But do I want to force a woman to bear a child with Down’s? Do I think we should somehow cheer those women as being heroes, as folks like Santorum, who has a disabled child, and Palin, who has a disabled child, are cheered by the right? The responsibility of raising a child is huge, and it’s hard enough to do with a non-disabled child. Do we want to force that on people who are unwilling — or unable — to bear it?

This hits home for my wife and I. In October, we found out that our younger son was diagnosed with autism. We had some idea prior to this that something was amiss, as he wasn’t talking (nor showing much interest in starting, i.e. making the normal child “babble”). Autism is a scary diagnosis, especially with a 2 1/2 year old. With now 4 months of intensive speech therapy, at best we can say that we’re seeing improvement, but it’s slow going. Not a week goes by that my wife doesn’t ask me, “He’s going to talk eventually, right??” Well, I think he is, but we’re not seeing it happen so much yet. He has many of the characteristic behaviors — he’s very picky about environment and routine, not at all interested in interacting with other children [and will throw a fit when they encroach on his space]. Trying to get a haircut requires my wife and I to work together to hold him down in a seat as he screams and struggles while the lady at “Cool Cuts 4 Kids” tries not to cut his head, rather than his hair. At 2 1/2 years old, the first time he ever let me clip his fingernails was last Friday. And the worst thing of all is that he has no concept of language, so while you can sometimes soothe or explain what’s wrong to a 2 1/2 year old, nothing gets through. I believe it will be easier someday, due to all the work that we’re putting in now to intervene, but severe cases of autism sometimes never result in an adult who can function for themselves in society.

As I said, had my wife and I known this prior to his birth, we still would have had him. But had my wife and I known before she’d conceived that this was going to happen, I’m not ashamed to say we might have waited a month to avoid this outcome. I dearly love my son, and I can honestly say that he regularly brings great joy to my life. But it’s hard. It’s really hard. And I know that it’s going to be hard — that he’s going to face difficulties doing “normal” things — all his life. I wouldn’t tell prospective parents that I wish they have an autistic child. Every parent wants to have a child that they can mold into a success, emotionally and intellectually. This diagnosis is a disability that means that we’ll have to work that much harder to overcome. We want him to have all the success that my wife and I have had in life, and that his older brother [and his upcoming younger sibling] have in life. We know, as parents, that we and that he are going to have to work much harder than “typical” for him to achieve that success. We’re willing to take that on; but I can’t say it’s what we would have chosen, all things being equal.

Nor is it only an emotional and parental burden — it is financial. We’re lucky, as parents go. I have an excellent job with pretty good insurance, and a lot of what we’re doing is covered by my insurance or through non-profits funded by the State of CA. That said, I’m on an HSA-driven health care plan, so we’ve got a pretty sizable deductible, and we blew through it in 3 months of his therapy. All told, we’re talking about costs related to the diagnosis and associated other testing that would have cost close to $10K at “book” prices (obviously the insurance-negotiated rates are lower), and ongoing therapy that would cost at least $2K/month at “book” prices, and still at least $1K/month at insurance-negotiated prices. To give our son the level of care that we feel he needs without all the insurance might be possible, but would be extremely painful (likely requiring us to move out of our house to a cheaper rental, or for my wife to get a job outside the house, which we’d especially want to avoid as she needs to keep up with his care & therapy). And it would only be possible for us to do because I’m the exception, rather than the rule, when it comes to economics.

Rick Santorum suggests that Obama wants to “cull the disabled” as a cost-saving measure — it’s easy to say that when you have the level of wealth that Rick Santorum (and to a lesser extent, upper-middle-class folks like myself) have access to. When you don’t have access to the level of care that we can provide, you’re consigning your disabled children to a second-class life. I don’t think that’s a Republican value, nor do I think it’s a Christian value*, to bring people into this world and not be ready and able to give them the tools to succeed in life. Rick Santorum might say “well then you should be chaste and not produce a child” — but being ready and able to provide those tools for a normal child, and being ready and able to provide those tools to a disabled child, are two very different things. (*Full disclosure — I’m neither a Republican nor a Christian, so perhaps I can’t necessarily hold court on those two declarations)

When it comes to autism, unlike something like Down’s, though, the “typical” case can be “recovered”. It’s tough to describe, but I often say that autism is something that makes “normal” things a lot more difficult than they would be for non-disabled people. Most of these difficult things can be language-oriented, and we know that language development occurs in fury in the 0-3 year range. During this time, a child is developing mental pathways in the brain, and it’s much easier at these early years than later in life. One of the critical problems dealing with autism is that we don’t typically know a child is autistic until after he starts displaying speech delays, i.e. after the age of two. This means that the intervention after the age of two to get an autistic child to “catch up” to their more typical peers must be very intense — right now my son is in 8 hours of speech, OT, and ABA therapies every week, and we’re looking to get some of the hours increased. The goal is to slam those neural pathways into place through repetition, because they don’t come naturally.

What does this mean? It means that knowledge that a child is autistic prior to that child’s birth can be a signal to provide therapy for the autism at a much younger age. It means that instead of waiting for a delay to be prevalent, you’re working hard from day 1 to ensure a delay never develops. It still means there’s a lot more work than a typical child, as the neural pathways that the child would normally develop don’t happen on their own. But it means that you can be building those pathways earlier in life, and get better outcomes for those children — something that Rick Santorum and Barack Obama can agree is the goal.

Rick Santorum claims that Obama wants to provide this testing so those children will not be born. As much as I’m against Obamacare, I think Rick Santorum’s positions on abortion suggests that he cares a lot more about making sure those children are born than he cares about what life they’re born into. Those of us in the real world are trying to make good lives for our children — whether we choose to have them or choose not to because we cannot provide an adequate life — and prenatal testing gives valuable information whatever that choice might be.

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  • Let’s Be Free

    I have an honor roll, popular, joins all the clubs and makes all the squads straight A kid and a special needs kid. I love them dearly. They are unique and lovely human beings. Each was born into a wonderful life. I don’t mold them. I try to help them be the best they can be, God willing, knowing I can never be perfect and understanding each is thankful for the gift of life .

  • http://www.thelibertypapers.org/ Stephen Littau

    Brad:

    First, congratulations about the new baby on the way!

    “Do I think we should somehow cheer those women as being heroes, as folks like Santorum, who has a disabled child, and Palin, who has a disabled child, are cheered by the right?”

    I think you and your wife are heroic for doing all you can for your child. This is such a personal issue and you dealt with it in such a personal way in this post. I think this is too personal of an issue of personal choice for government at any level (but especially the federal government) to take away from anyone who would be faced with such information obtained by prenatal testing. If my wife and I were faced with that news, I honestly don’t know what we would have done about it. I don’t think anyone knows for sure unless they are faced with it themselves.

    Still, I think certain prenatal tests are good if for no other reason, expecting parents have some inkling of what they are walking into.

  • John

    As libertarians I think we can all agree that the government has no business mandating free coverage of prenatal testing. Regardless of Santorum’s views on abortion I think the guy has a valid point in the quotation you provided.

    Also, if you feel comfortable explaining, I would be interested to hear the basis of your pro-life view if it isn’t from a Christian worldview. (I’m not critical, just curious.)

  • http://thelibertypapers.org/ Brad Warbiany

    John,

    Good question. For me it comes down to a question of rights. At what point does a new human life (and I believe that at the point of conception, that is a new human life) deserve rights?

    The line can be drawn in multiple places. Pro-choice folks draw it at birth. Hardcore pro-life folks, like Rick Santorum, draw it at fertilization (not even implantation, if you’ve ever heard their opposition to drugs like the morning-after pill which prevent implantation). I happen to think it’s somewhere in the middle.

  • Gabe

    if life begins at conception, then can someone register to vote when 17 years and 3 months have passed since they exited from their mother’s womb (assuming the pregnancy was full term)? Can they be counted in a census as a 5-month-old fetus? Can they apply for a driver’s license at 15 years and 3 months?

    after all, according to you that’s when their life began, right?

  • http://thelibertypapers.org/ Brad Warbiany

    Gabe,

    That’s a silly, pointless comment, and I’m surprised that you’d dare express something so asinine in public.

    Whatever side you come down on, these are actual moral and ethical issues. The date at which various age-based legal privileges are granted is completely irrelevant.

  • Gabe

    Wow. I had hoped you would focus on the issue, rather than resort to petty name-calling.

    If you believe abortion is morally wrong and constitutes a crime (specifically, murder), that’s fine — as a fellow libertarian I accept your viewpoint. Why you can’t accept my counterpoint is beyond me.

    You made a statement that “at the point of conception, that is a new human life.” I took something commonly defined with the start of life, namely age, and explored the implied ramifications of your statement. I chose age since human age is typically defined as something like “the amount of time that has transpired from the start of someone’s life.”

    That I used legal privileges for the examples is ancillary to the main point, so I’m unsure why you focused on that. Take a secular/cultural observation such as a Quinceañera celebration instead. Should that be celebrated at 14 years and 3 months after exiting the womb, rather than 15 years?

    Even if we accept that life begins “at the point of conception”, the problem still remains of how to accurately and precisely identify when conception has taken place. Current scientific methods only allow identification somewhere between 72 and 96 hours after it’s actually occurred.

  • http://thelibertypapers.org/ Brad Warbiany

    Gabe,

    The argument you’re making is silly and irrelevant. I’m not suggesting you’re silly or asinine. To quote Aaliyah (PBUH), “Age ain’t nothin but a number.”

    For the very reason you point out, assigning legal meaning to the date of conception is a difficult task. While I’m sure most people would love to celebrate their legal ability to drink for a 72-96 hour period (okay, so maybe a few of us did), it’s legally ambiguous to try to define “age” at a 4-day period from the time of conception. And frankly there’s no point. Is there really any legal advantage to change the concept of “age” from date of birth to date of conception? And again, we’re MERELY talking about a legal definition of age here, we’re NOT talking about a moral principal of human or natural rights. About the only possible change that I think it would make to *anyone* is that it would slightly affect the legal age of those people born severely premature. And for those folks, it would only make them “younger” by a matter of 4-5 weeks (i.e. 37 weeks is considered “full term”, very few babies born prior to 32 weeks can survive.

    Life begins at conception. Genetically that life is a unique human life. While there might be some debates over whether that’s a legal “person”, I don’t think anyone — INCLUDING the most hardcore pro-choice NARAL supporter — can claim that it’s not the beginning of new genetically unique life. Scientifically I don’t believe that’s under debate from any side.

    If you really want to ask questions about secular/cultural celebrations like Quinceañera, ask yourself why that cultural practice is set at the age of 15? I’d say it has a lot more to do with the time a female transitions from girlhood to womanhood (i.e. puberty), as well as with the time (perhaps in older cultures) at which a female was expected to be ready to leave her family and join a husband. If you really want to dig into secular/cultural traditions, the age of 15 no longer makes sense for either. Most reports are that girls are entering puberty at a younger age, so maybe a Treceañera is more appropriate. And in modern times we expect women to get an education (at least HS diploma, if not college) before they leave the family to marry, so perhaps 15 is instead too young.

    Are we getting silly, asinine, and off-topic yet? Nothing about the Quinceañera is a moral issue about age, it is a cultural tradition — often related to aspects of “coming of age” that change with the times. Nothing about pegging the age of 18 to voting or pegging the age of 16 to driving are particularly moral issues about the beginning of life either, it’s merely saying that at the age of 18 years from birth, OR 18 years 9 months from conception, most people should be expected to be adults, live on their own, and granted the franchise.

    I hope that all the wasted words I’ve just written will fully satisfy you as to why I think defining “legal age” starting at birth or at conception is irrelevant to the moral issues of natural rights of the unborn. I hope that the fact that you’ve goaded me into wasting all these words will help you understand why I dismissed it so summarily in harsh terms the first time around. You’ve dragged me down into this off-topic tangent, and I hope that I’ve at least answered your question as to why I don’t think matters whether we assign age based upon the date of birth or the date of conception, but why we use the date of birth because it’s just such an easy and concrete dividing line that anyone can figure out by looking at a calendar.

  • Gabe

    Hmmm. You wrote that “at the point of conception, that is a new human life.” I brought up questions about how life is defined, and the implications of that definition. I would consider that germane to the argument, not “silly and irrelevant”. The point was not whether the age of 15 was appropriate for the celebration, but rather how to properly determine when that age (or whatever age of interest you choose) has transpired.

    It’s relevant because it’s impossible to determine the exact moment of conception, and therefore exactly when that new life has begun. If that’s the case, then it’s therefore impossible to determine exactly what constitutes taking that life.

    Let’s say a woman has a zygote that has already implanted in her uterus (ie, experienced conception), but is not yet showing any determinable chemical or physiological signs of conception (ie, it’s still within the 72-96 hour period). Then, she has a surgical procedure or operation, the side effects of which inadvertently cause fetal death, either immediately or through imminent miscarriage. Thus, through no fault of her own, and without anyone’s prior knowledge, her actions directly led to the fetal death. Would you consider that an abortion?

    And if, as you wrote, you don’t feel strongly enough to “throw a woman or a doctor in a cage for aborting a pregnancy”, what do you believe the punishment should be? If a life has begun at conception, how is that different than the same life 1 year later, in your mind?

    You wrote that “we use the date of birth because it’s just such an easy and concrete dividing line that anyone can figure out by looking at a calendar.” That’s precisely my point. If you wanted to look at a gestational age of something like 15 weeks, or 20 weeks, or 25 weeks, those are also discrete and identifiable lines to draw. Trying to argue that “the point of conception” is equally concrete… now THAT is a silly and asinine argument to make.

  • http://thelibertypapers.org/ Brad Warbiany

    I brought up questions about how life is defined, and the implications of that definition.

    You brought up definitions of how age is defined. I am saying that it’s quite natural to define legal age and life by two different dates. There’s no need to assign age to the date of conception (since we don’t know when that is).

    Thus, through no fault of her own, and without anyone’s prior knowledge, her actions directly led to the fetal death. Would you consider that an abortion?

    Yes. Not an intentional one, of course, but at that point (implantation), the woman is pregnant. The surgery inadvertently aborts that pregnancy.

    And if, as you wrote, you don’t feel strongly enough to “throw a woman or a doctor in a cage for aborting a pregnancy”, what do you believe the punishment should be?

    Prior to birth, I think you have a case of competing rights between mother and baby. In the first trimester, I think the rights are biased towards the mother — I don’t think a woman should be penalized at all for a first-trimester abortion. I don’t think it should be illegal. In the third trimester, at the point at which that baby is basically viable outside the womb, I think the rights are biased towards the baby. If a pregnancy progresses to that point and the woman doesn’t want the baby, the answer should be carrying it to term and then giving it up for adoption. When you get to that point, I think a fine for the woman and jail time for the doctor are the limits. I don’t have an answer for the second trimester — some evidence shows that a baby can be viable in the second trimester, but I honestly don’t know how the dividing line between woman’s rights and baby’s rights should be drawn.

    If a life has begun at conception, how is that different than the same life 1 year later, in your mind?

    Again, I think that at some point after conception, the baby gains some rights. As described above, the question of competing rights between the baby and the woman carrying it are “competing” only until the birth. At that point at woman has full legal ability to give the baby up for adoption, and thus her continued responsibility for that baby is voluntary. The difference after the birth is not that the baby magically gained rights upon exit from the mother’s womb, but that the baby’s right to life no longer *competes* with the woman’s right to an empty uterus.

    Trying to argue that “the point of conception” is equally concrete… now THAT is a silly and asinine argument to make.

    Again, I don’t think it is. A new human life is formed at the point of conception. I’m not suggesting that the woman in your hypothetical above (baby she doesn’t yet know she’s carrying is aborted in an unrelated surgical procedure) should be penalized for that abortion. A life has been ended but I don’t think we can say a crime has taken place. Likewise, even deliberate abortions taken early in the pregnancy, though I consider them unfortunate, are questions of the woman having a much stronger claim to the right of an empty uterus than a 1″ long mass with barely the first formations of a brain stem and organs. I consider an abortion at that time sad, much as I consider the two first-trimester miscarriages my wife had prior to us successfully having children to be sad.

    But again, I don’t think it’s all that controversial to suggest that life begins at conception. The real question is whether that life at that point confers any responsibility on others to maintain it. My belief is that prior to 37 weeks of gestation, there is a positive responsibility put onto a pregnant woman. But that positive responsibility doesn’t become meaningful until MUCH later in the pregnancy than at conception.

  • Gabe

    Not sure what to say at this point, since your most recent reply either misconstrues what I had written, ignores other things I’ve written, or majorly hedges on your previous statements.

  • http://thelibertypapers.org/ Brad Warbiany

    I’m not sure how you can say that, Gabe. To say that I’ve “misconstrued” what you’ve written would assume that you’re not conflating the issues of life and of age, which I’ve suggested you’re doing.

    I’m not sure where I’ve ignored other things you’ve written. Perhaps you can point out what I’ve ignored, and I’ll address it.

    Regarding the “majorly hedges” on previous statements, I’d suggest that you’ve taken a statement from one paragraph in my original post where I suggest I’m “generally pro-life” and assumed into that statement things that are a lot deeper than I really believe. In my reply to John above, I go into more detail about the nature of my beliefs on abortion. If you read that post, I don’t think anything I’ve said to you is a major hedge on what I wrote there. Some of it is an expansion, but not a hedge.

    Granted, I’m not sure why you took one paragraph of a 1600-word post to argue about abortion, given that everything except that tiny chunk was about prenatal testing, disability, and the relationship therein, not about general moral questions of abortion. Nor do I understand why you focused so much energy on questions of legally defining age.

    But I guess if you think I’ve misconstrued your writings, perhaps you have identified some point within those words that simply eludes me.

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