Rick Santorum Wants to Protect YOU! From the Evils of Prenatal Testing

I’m a disabled person, and I actually wholly support prenatal screening and full access to prenatal care, because I think it can result in healthier pregnancies and better outcomes for both pregnant people and infants.

Feb 21, 2012 at 12:30pm | Leave a comment

This weekend, Rick Santorum informed voters that he opposes prenatal testing, because it leads to selective abortion. And that the President of the United States supports aborting disabled fetuses, raising the specter of Barack leaning over the shoulders of pregnant folks, pointing at ominous ultrasound findings and recommending abortion.

Rick wants us to know he really cares about people with disabilities, you know. So much that he’s willing to go to the mat for us and put a stop to the pernicious evils of prenatal testing.

I am so bloody tired of being used as a pawn by both the left and the right in reproductive rights rhetoric, I could scream. And in fact, I often do. The right tells us that they oppose bodily autonomy and choice because it would lead to abortion of “precious angels,” which is apparently code for “disabled people,” while the left, well, unfortunately often claims that the worst catastrophe ever would be to have a disabled child, so it’s a good thing we can screen for that sort of thing and prevent it from happening.

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I’m a disabled person, and I actually wholly support prenatal screening and full access to prenatal care, because I think it can result in healthier pregnancies and better outcomes for both pregnant people and infants. On its own, prenatal screening is value neutral -- it’s a way to find out more about what is going on with a pregnancy. I fail to see how that could be a bad thing, because in my opinion, the more you know about a pregnancy, the more you can support the health of mother and fetus.

Unfortunately, prenatal testing often gets twisted for other uses.

The assumption people like Santorum are making is that when prenatal screening uncovers disability, the automatic response is to abort. That’s... not necessarily the case. In fact, prenatal screening for disability can help parents prepare, and may result in being informed about measures they can take to make pregnancy, labor and delivery safer. It can also help medical teams address and possibly prevent complications that might arise in connection with disabilities.

Really, the determining factor in how prenatal testing is used is how it is approached by expecting parents and care teams. If a doctor approaches it from the outset as an exercise in checking for disability to prepare for abortion, that's how it will be treated. On the other hand, if a doctor recommends testing to assess the pregnancy and determine whether any special precautions should be taken, that totally changes the game. Likewise, parents get to exercise autonomy here when they decide which tests they want, and why.  

Having a disabled child is not the worst tragedy ever, but it can require some preparation. It helps to know ahead of time, for example, if an infant needs to be rushed to surgery for a repair of something like a critical heart defect. Or if a baby needs to be delivered in a hospital with a NICU, rather than being born at home or in a birthing center. Being aware of disability as a result of prenatal testing can also give parents time to adjust, seek information and resources, and find local support groups so they can be ready to support their children.

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Sadly, prenatal testing for disability often results in scaremongering. Expecting parents are not provided with neutral and informative discussions about the test results; it may be assumed that they are planning to abort, or they may not be provided with data they can use to make an informed choice about whether they want to abort. Frightened by the idea of disability, and living in a society where disability is stigmatised, parents may opt to abort because they lack the knowledge they need to make empowered decisions. 

Knowledge like information from actually meeting people with that disability, or meeting parents who have raised children with that disability, to get a better idea of what life is actually like for disabled people, would be really helpful, and often isn't on the table. It would also help to have a realistic explanation of what to expect, and an admission that some things are unknowable; disability is highly variable, which means disabled children and adults may need varying levels of assistance and care even when they have the same diagnosis.

Abortion for disability is a fact, it’s something that happens and continues to happen, and prenatal testing obviously enables it, but it doesn’t have to. Denying women access to prenatal testing can be fatal in some cases, and is not the way to approach the problem. The answer to a serious social problem should never be to restrict the rights of people to make decisions about their own bodies. Ever.

If we want people to stop aborting disabled fetuses, we need to build a more supportive world for people with disabilities. People like Santorum who claim that they care about disabled people could start by not slashing social programs aimed at providing support to people with disabilities, including, yes, disabled children. Concerntrolls wringing their hands over the abuses of prenatal testing should be far more worried about the fact that this is not a society that welcomes disability, and that this is a major contributing factor to decisions surrounding abortion for disability.

We need to fight ableism, so that parents informed that a fetus may have disabilities don't jump to worst case scenarios. So that parents who are aborting for disability because they do hate and fear it dwindle in number. We could live in a society where disability is accepted as a natural variation, rather than something terrifying and wrong, and where prenatal testing is used as it should be, to help parents and care providers prepare for birth.

Some people are forced to abort for disability not because they are evil ableist scum who hate people with disabilities and think we shouldn’t exist, but because they are well aware that they are not equipped to raise a disabled child. This is not a personal or moral failing, it is a social one, because it is society that determines whether parents access the support they need to raise their children.

It is society that determines whether parents get help with extremely high medical expenses, that determines whether disabled children are welcome in public places, that determines whether disabled children can access education, that determines whether a kid using a wheelchair gets to go to the beach or not. I’m tired of seeing the right acting like it’s “helping” people with disabilities by limiting the right to choose, when it could be doing a lot more to help us, like promoting ADA enforcement (many Republicans oppose the ADA) and fighting the social attitudes that make it hard for people with disabilities to survive.

Expecting parents have a right to access prenatal testing, and to make decisions based on the outcome of that testing and a discussion about the implications of the findings. A discussion that should include thorough information so they can make a choice on the basis of actual facts, not scaremongering and entrenched social attitudes about disability and what it means to be disabled. That choice is ultimately a private one, and it should not be made into a political football.

Parents can also choose to personally opt against prenatal testing, for whatever reason they may have. I actually am inclined to view this as a mistake; I think some parents choose not to get tested because they’re determined to carry the pregnancy to term no matter what the tests uncover, which is great, but testing might help them prepare to more effectively care for their child after birth.

It’s time to put your money where your mouth is, Rick: If you really care about disabled people, start by joining us in our fight for social equality.