Wednesday, July 30, 2014

Down Syndrome must not be a Wedge Issue in the Abortion Wars

A few weeks ago, I hosted an essay on the Pro-Information movement and the threat it faced in the wake of a new law passed in Louisiana, with my comments the next day here. Pro-information is a short-hand for an approach to making sure that women who have received a pre-natal diagnosis of Down syndrome also receive the most up-to-date and accurate information about the genetic condition.

It is a coalition of pro-choice and pro-life (and unsure) folks who respect the right of women to terminate their pregnancies after a pre-natal diagnosis, but really don't want them to do it. Given the nature of the abortion debate in our society, it's an uneasy coalition, with pro-life activists trying to ban any discussion of termination as an option. That's what happened in Louisiana.

Yesterday, Nursing Clio, a wonderful blog on history and medicine, hosted a piece called:
Prenatal Testing and Counseling: The New Front of the Abortion Wars?. The piece places the Louisiana law in the context of the broader fight over women's healthcare, and reveals some important details. You should read the whole thing, please, but here are a few excerpts and comments [edited and reformatted lightly. My emphasis]:
The Louisiana law, unlike the ones in other states, was not spearheaded by the Down syndrome community. As Stephanie Meredith ... explains, “In most states, Ohio, Kentucky, Massachusetts, etc., the law was initiated by grassroots Down syndrome advocates who were trulytrying to walk a fine line between respecting both reproductive and disability rights. In Louisiana, the law was driven largely by the Bioethics Defense Fund, and my understanding is that the leaders of the local Down syndrome organizations were unaware that the law had been introduced.”
This distinction in the origins of the bill is a significant one. The Bioethics Defense Fund frames the change to the law as an issue of discrimination and argues that presenting termination as an acceptable option for women in the event of a prenatal diagnosis of Down syndrome constitutes state-sponsored discrimination that violates the Americans with Disabilities Act. The Bioethics Defense Fund is a pro-life group concerned with creating “prolife policy guides” for legislatures to further their anti-abortion agenda, and it has played a significant role in the recent legislative attempts to erode reproduction rights for women. Given the lack of Down syndrome advocates’ involvement in the development of the law and the Bioethics Defense Fund’s clear anti-abortion agenda, the change to the Louisiana law seems designed to co-opt a movement aimed at addressing the specific needs and concerns of those in the Down syndrome community and warping that movement to serve an anti-abortion, pro-life agenda.
It's not just about co-opting a movement. If a fetus with Down syndrome can be discriminated against,  then that fetus is a person. If that fetus is a person, so is every other fetus, and then abortion gets criminalized. The "personhood" movement is, in fact, attempting to redefine personhood back to the fertilized egg, so that miscarriage becomes manslaughter.

Now you, dear reader, may believe that abortion is murder and that every fetus is a person. That's your right. But the pro-information coalition depends on uniting pro-choice and pro-life individuals in order to help pregnant women after they receive a pre-natal diagnosis. I want them to choose life. I acknowledge, wholeheartedly, the choice part of that sentiment.

The BDF does not care about people with Down syndrome. It cares about using the issue of prenatal diagnoses as a wedge to further its radical agenda. From Nursing Clio:
The goal of groups such as the Bioethics Defense Fund seems to be to introduce as much “friction” as possible into the medical system when it comes to abortion. These groups chip away at our reproductive rights by disrupting the relationship between the medical provider and the patient, between the patient and the medical procedure, and between the patient and access to information.
As I wrote, I am pro-choice, pro-information, and anti-eugenics. It's a fine line to walk, but I believe that learning to walk this line is going to be an essential task not just for families and people with Down syndrome, but for our species. 

How we handle the consequences of ever-more-accurate, early (in the pregnancy) and inexpensive prenatal testing for genetic conditions like Down syndrome is a test run for the future of human procreation in our coming genetic age. This attempt to use the issue in order to divide, restrict, and limit shows one of the perils ahead. That's the long game.

In the short term, though, nobody I care about wins from efforts like the BDF and Louisiana. Not people with Down syndrome. Not expectant mothers. Not doctors. Not the activists working so hard to provide good information. It just feeds the radical right's pursuit of control over women's reproductive rights. Ultimately, I even suspect it will lead to MORE abortions, as good information and a broad coalition is the best tool that we have, but it only works while it's not politicized.

6 comments:

Mardra Sikora said...

I'm with you, David, "As I wrote, I am pro-choice, pro-information, and anti-eugenics. It's a fine line to walk, but I believe that learning to walk this line is going to be an essential task not just for families and people with Down syndrome, but for our species." This week I am writing a speech that walks that line. It is hard to articulate, hard (emotionally) to research, and hard to face the consequences if we go *wrong.* But we carry on, eh?

David Perry said...

Great to hear you are speaking on this. Where, if I might ask?

Sandra McElwee said...

I agree with The decision in Louisiana. Just last year my OB allowed me to view the PowerPoint provided to their practice by the State of California--it talked about after the screening test the state would pay for the amnio to confirm and the state would pay for the abortion. That's Eugenics -- full blown Eugenics. Louisiana will allow an abortion but te state's not paying for it anymore.

David Perry said...

Hmm, I'm a little confused Sandra. In LA the issue is about paying for the procedure, but also that LA has told doctors they may NOT mention termination as an option. In California, they offer the procedure and pay, but what they lack is consistent accurate and complete information.

Just to be clear - the state SHOULD offer amnios and offer to pay for termination. These procedures should not just be available for the wealthy. What they should ALSO do, however, is to offer complete information that will help people make informed decisions - decisions that will, I hope, result in lowering the rate of abortions.

Ivyfree said...

" What they should ALSO do, however, is to offer complete information that will help people make informed decisions - decisions that will, I hope, result in lowering the rate of abortions. "

None of which will do anything because right-wingers are mortally opposed to providing financial help for programs that will assist the parents in coping with a child whose capabilities may be near-normal to requiring total care for their entire life, which may extend for years after the deaths of the parents.

However, many women will still choose to abort, no matter what assistance is available. Because nobody, during pregnancy, prays for a child with Down syndrome no matter how much of a blessing they claim s/he is later. Everyone prays for a healthy baby. Given the choice, that's what most people will choose. I'm not making a moral judgment here. I would certainly terminate a Down pregnancy myself, and I wouldn't waste much time thinking about it.

David Perry said...

Thank you for the comment. I wrote you a response here - http://www.thismess.net/2014/08/i-wouldnt-waste-time-thinking-before.html

I think there's some deeper thinking we might do, if you're interested in dialogue.