I don't have much good to say about Rick Santorum. He practices a form of Catholicism that's not mine. There is probably very little that we agree about politically. But I think agree with Joe Klein that Santorum's love for his disabled daughter is inspiring.
My son's disability is relatively minor. Yes, there are inconveniences that come along with raising a kid who gags at the sight of new food, sometimes struggles to find the right words, and needs elaborate systems of rules to feel secure, but overall, we absolutely blessed to have him in our lives. Perhaps if Ian was burdened with more a severe horrible condition that caused him endless pain, I would feel like Emily Rapp. I'm not sure.
Still, I meet families every day who have children somewhere on the disability scale between Ian and Emily Rapp's son, and the love they have for their children is humbling. Perfection is highly over rated.
Apt. 11d 
I believe parents have a right to prenatal testing, and a right to decline prenatal testing. I also believe they have the right to decide how to use that testing.
Yes, health insurance should cover prenatal testing.
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And yet, if Emily Rapp’s mother had had prenatal testing, there would probably be no Emily Rapp walking around today.
It’s kind of a self-refuting article, especially the second half of it where she talks about her own handicap and how it doesn’t stop her from having a good life. ER is saying, I have a handicap, I live a full, happy life and I wish that my mom had had the freedom to detect my deformity and abort me. And she somehow thinks that that pointing out the beauty and enjoyment of her disabled life undermines Santorum’s case. Weird. Well, I suppose Rapp’s got enough going on that she doesn’t notice that that part of the piece doesn’t make any sense.
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I am an adult who is fat and can barely see out of one eye. As I mentioned earlier, when I was little, a doctor wanted to put me in leg braces. In my childhood, I faced poverty and a lot of cruelty from elementary school classmates. Based on my daughter’s diagnosis and the similarities in our behavior at the same age, I would almost certainly have gotten an autism spectrum diagnosis had I been born into an upper-middle class family today. I was a difficult child and no doubt my parents’ lives would have been much easier without me at certain points.
That said, I am quite contented with my adult life, I have grown out of many of my former peculiarities, I have learned to be a good friend, and if you look back at my life, there are many It’s a Wonderful Life Episodes, where without me, things would have gone very badly for other people. My life has been worth living, and (when the prenatal testing technology improves) to encourage parents to abort children like me will make the world a poorer place.
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Tay-sachs or trisomy-18 are not inconveniences. It’s all very well to feel warm and fuzzy about other people’s burdens. That one family chooses to assume that burden does not mean that other families are obligated to do the same.
Amy P, I suspect you would not have chosen to end a pregnancy of a child like yourself.
To your earlier point, Emily Rapp writes: What I hope for other women is that they have the power to make their own decisions with as much information as it is possible to have, with respect to the specificity and complexity of their own circumstances, according to their own minds and hearts and not the dictates of another person’s worldview.
A person with a disability is not automatically required to agree to a shared value set. It is possible for Emily Rapp to believe that women should have the right to decide.
I should point out–I won’t convince you, and you won’t convince me. It is fruitless to debate this further.
I will not be voting for Santorum.
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Yeah, Cranberry. I agree. Tay-sachs and trisomy-18 are not even in the same league as a little autism. I also would never vote for Santorum. I also entirely empathize with Emily Rapp. I was just pointing out that I really love seeing a family adore their disabled kid.
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But, at the risk of venturing into dangerous territory, embracing the choice position fully that I do, means accepting that some women will just to terminate a pregnancy for a “little autism” if they have the knowledge, and that they should be legally able to do so. As we know, women will also chose to terminate pregnancies because a child is female (or less occasionally male) or because they have brown eyes (a NY times article, in this case, because they’d realized that the sperm donor they’d chosen might result in a brown eyed child, and they did not want to be outed on the donor issue).
Though I am vehemently pro-choice and believe that a woman should be legally permitted to terminate a pregnancy without interference (my bar is until the child is viable without the woman’s body),
I also respect people who feel differently. And, I love seeing the lesson that children are loved by their parents with desperation, and that love should not depend on the child’s perfection (and rarely does).
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As we know, women will also chose to terminate pregnancies because a child is female (or less occasionally male) or because they have brown eyes
So, I do my best to not debate political issues such as abortion with people, because it never gets anywhere, but there is one guy on Facebook with whom I can not control myself because — unlike most Christian anti-abortion people — he claims to be a Libertarian, and always couches his pro-Life arguments on Libertarian grounds that completely get my goat. “Pregnant women are being forced against their will to get abortions by their boyfriends who don’t want to support them, so we need to ban abortions to protect women’s liberty” — and similar Orwellian crap where we can only increase Freedom by limiting it.
As someone with three brown eyed daughters, I obviously abhor the thought of sex-selection abortions for people who want only sons (or green eyes). But my moral judgment is against the people who seek the abortions and the culture that encourages it. And the solution is to work to change the culture (gender ratios have evened out in South Korea) not ban the tools (pre-natal screenings, abortions) that are used to enact the cultural discrimination.
Similarly, if America provided more services to people with disabled kids, the marginal pregnant woman with the marginally disabled kid would not have an abortion — and that’s a good thing. And yet the same people fight against permitting abortions, and do not fight for (and actually fight against) policies that will actually decrease them.
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“And yet the same people fight against permitting abortions, and do not fight for (and actually fight against) policies that will actually decrease them.”
This is what gives the game away.
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“…some women will just to terminate a pregnancy for a “little autism” if they have the knowledge, and that they should be legally able to do so. As we know, women will also chose to terminate pregnancies because a child is female (or less occasionally male) or because they have brown eyes (a NY times article, in this case, because they’d realized that the sperm donor they’d chosen might result in a brown eyed child, and they did not want to be outed on the donor issue).”
Even “a little autism” tends to be pretty scary to deal with, at least or especially early on. It can look like what you really need is an exorcist, and it can go on for years.
I remember reading some years back a poll where Americans were asked under what circumstances they thought abortion was a good idea. As I remember, about half thought that abortion was a good idea if there was a good chance of the child growing up to be obese. I suspect that means that a lot of respondents don’t know where “obese” starts and that they themselves likely qualify, but that ignorance is all the more reason for concern.
I’m not against testing per se, but I think that the mere presence of the testing process alters people’s decision-making process. It’s like not intending to buy a car and then going to the car lot and buying a car. Paradoxically, if it is really your plan not to spend money on a new car, you maximize your freedom of choice not by going to the car lot, learning about features, and test-driving cars, but by staying away from the lot. It’s that “information” that overpowers your previous principled commitment not to buy.
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People make decisions for silly reasons all the time. I would worry, however, I can’t conceive of hanging around to complete a survey over “good reasons to have an abortion.” Had they nothing better to do?
The genie won’t go back in the bottle. Even if it weren’t covered under health plans, parents and doctors want that information.
It’s illegal in India to use testing to determine gender before birth, but it still happens. http://www.washingtonpost.com/world/sex-selective-abortion-on-rise-in-india-among-couples-without-boys/2011/05/23/AF91bHAH_story.html
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Paradoxically, if it is really your plan not to spend money on a new car, you maximize your freedom of choice not by going to the car lot, learning about features, and test-driving cars, but by staying away from the lot.
No one is trying to mandate or require you to visit a car dealership. This issue on the table is whether to “maximize your freedom” by passing a law making car dealerships illegal.
It is the Conservatives who try to pass laws that require you to go to the car dealership (mandatory view of ultrasounds, mandatory waiting periods, etc.)
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“This issue on the table is whether to “maximize your freedom” by passing a law making car dealerships illegal.”
I’m not talking about legality or illegality of prenatal testing. In fact, I even said, “I’m not against testing per se…” I’m just pointing out the psychological effects of starting the testing process and that if somebody is genuinely committed to not having an abortion even if there are problems, they shouldn’t do testing for stuff where the only prenatal medical measure available is abortion.
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“I’m just pointing out the psychological effects of starting the testing process and that if somebody is genuinely committed to not having an abortion even if there are problems, they shouldn’t do testing for stuff where the only prenatal medical measure available is abortion.”
I refused a lot of prenatal testing, other than u/s, for just this reason. I didn’t want to get into ethical discussions over “how” disabled a child I would be able to live with. I pretty much wanted to go all in unless it was obvious my health was at risk. My feeling is that if you want to be a parent, you want to be a parent, no matter what disabilities the child might have. If your kid was in a car accident and put in a wheelchair, you wouldn’t say “Oh, I don’t want to be a parent any more.” (I also talked about this with my husband, and he agreed/shared my values. Or he just said so and hoped for the best.)
I had an u/s at 18-20 weeks because I wanted to know the baby’s sex. 🙂 So yes, there was screening for DS and other issues, but I was prepared for how I was going to address any potential problems with my midwives.
I am very uncomfortable with the idea of abortions for reasons of fetal defects/potential disabilities. Really uncomfortable. It puts me in a position, I think, somewhat similar to those who oppose abortion in all situations. I think judgy thoughts about women who have abortions because of prenatal testing results.
But I have lots of judgy thoughts about lots of things people do. And I keep them to myself and I understand they have the right to make decisions I wouldn’t – and didn’t – make.
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