I'm going to read Emily Rapp's new essay in Slate over and over again because she is writing beautifully of paradox, that elusive thread that I tried to articulate just the other day. Emily is a writer and a mother of a young boy with Tay-Sachs, a rare and degenerative genetic disorder. Her son will die one day, probably very soon, and her response to the recent ruckus caused by Rick Santorum and his extremely conservative views about women is very provocative, to say the least.
What do you think about Emily's essay?
I was blown away by emilys essay. For those who disagree with her I would ask this. What if you could avoid bringing a child with a significant disability into the world by means of a blood test performed just before after your egg was released so that you simply wouldn't have sex at that time Is there something wrong with that choice (if it existed).?
ReplyDeleteFirst, having a man (me)respond to a woman's control of her body is bizarre, but nonetheless, I posted about this issue last week. I abhor Rick Santorum's positions on every issue because he is a truly disingenuous human...and of course, prenatal or preimplantation screenings should not be prohibited.
ReplyDeleteMy quandary deals with selective abortion because the message it conveys to the disabled community is that "some lives are not worth living." Additionally, while the genetic markers can be determined, the severity of the syndrome cannot: Down's can range from very mild to very severe and Tay Sachs can be infantile, juvenile or late onset. No one knows.
For anyone interested in examining both sides of these issues which are complex, because the human psyche is complex, I'd recommend "Prenatal Testing and Disability Rights" published by the Hastings Center...fodder for much thought and no answers.
Oh, thank you for linking to this! I wouldn't have found it otherwise.
ReplyDeleteBecause I don't have a child who has such deficits and whose life-span will be so surely shortened, I feel that I cannot always say what I really think on this issue. How would I really know? I can't.
ReplyDeleteBut when I read this essay, there was a part of me which thought, "Oh god. This makes SO much sense."
I'll be damned if I think that anyone should be forced to bear a child whose entire short life will be pain and suffering. For whose benefit would that be?
Bam. Take that, Mr. S.
ReplyDeleteI want to make it clear that I am pro-choice, and I dislike Santorum. I find it ironic that the very ones who say that government intervention in one's affairs should be minimal are trying to control the most intimate and personal decision of all through government.
ReplyDeleteHaving said that, many of those who are in the pro-life movement feel that the loss of any lives due to the possibility of health risk or any personal issues that a pregnant woman has is overridden by the fact them many born in such circumstances are so wanted thereafter. If the mother chooses not to experience the agonies of raising a child, she can give up the child to someone who would. There are agencies that will step in gladly in such cases.
FOr many disabled folks, this is also a troublesome thought; that the fact that they have issues, some heartwrenching to their parents, should they not be alive? Should this decision be dependent on who happened to be your mother? It is indeed countered by those who want the right to die due to painful, helpless conditions, but there is very much an activism in place that is trying to make such conditions not a reason for choosing death.
There is fallout either way one goes in these arguments,and it depends on which personally strike you the hardest. Karen Santorum wrote a book on carrying a baby that was severely disabled to term, and how sweet it was. How sweet it would have been had Baby Gabe lived in a painful state unlike their Bella who is not hurting like Ellen's child, may have been a whole other story, but..but.. there are people who have such children and advocate more than ever that they should be brought to term when the condition is known and their lives prolonged as much as possible.
As a 23 yeat old RN I had the opportunity to care for an infant born as the result of a very late term pregancy termination related to the mother's severe psychiatric illness and risk for suicide. The memory of this experience has never left me, and to this day brings up very uncomfortable feelings for me as well as those I choose to share it with ( not many). Each time I see the political world attempt to address this issue I tend to think "they just don't get it". It is a far more complex issue than our current political system can capture, let alone talk about in an intelligent manner, and is ultimately entwined in the complex relationship between mother and child and the level of support provided by the surrounding society. My point of view is that as a society, the best we can do is to provide all women access to care, support and unbiased information, no matter the choice. We cannot continue to pretend that any of us can ever understand what it is to "walk in someone else's shoes" especially those of a mother. Not even Rick Santorum.
ReplyDeleteTruly sad is that, even were this essay brought to his attention, I'm certain Santorum would never get through the first paragraph. It is beautifully written and an important point, but he has made up his mind. The only thing to do is make sure that legislators aren't allowed to make medical decisions for individuals. Any of them. Men, women, children, anyone. Not their purview.
ReplyDeleteThanks for the link, Elizabeth!
I loved Emily's essay, but I am predisposed to like anything which criticizes Santorum. Emily's essay reminds me not to simplify the issues too much. It's important to embrace the muddiness and complexity of abortion, and to keep listening even when I think I got it. And then Mrs. Colleen, reminds me I have no idea. I just don't get it. Which is also good. and it might be good to apply this to other things in life. Thank you, Elizabeth for linking to this essay. Not so much for the one yesterday though... ;>)
ReplyDeleteI just finished reading Barbara Kingsolver's book, Lacuna. Emily's beautiful essay brought to mind this passage:
ReplyDelete"That you can’t really know the person standing before you, because always there is some missing piece: the birthday like an invisible piñata hanging great and silent over his head, as he stands in his slippers boiling the water for coffee. The scarred, shrunken leg hidden under a green silk dress. A wife and son back in France. Something you never knew. That is the heart of the story.”
Barbara Kingsolver, Lacuna
Emily's essay is gracious and painfully honest.
ReplyDeleteMr. Santorum is not.
I am awestruck yet again by the man's arrogance.
And that people would really clamor for more.
Paradox and incredible complexity seem to be an important--and under-recogized--part of reproductive decision making. I've almost entirely stopped using the word "choice," because I think that implies an ease and simplicity which aren't the case.
ReplyDeleteRapp's essay fits in beautiful ways with the research I'm doing right now, about prenatal testing and Down syndrome.
Phil and Catherine, I appreciate your acknowledgment of how complex these decisions are, and the fact that they may have consequences for people with disabilities. I think it's important for potential parents to have real, nuanced, good information (and that information would say, for instance, that Down syndrome is very different than Tay-Sachs--all disabilities are not the same.)