In defense of the sanctimonious women's studies set || First feminist blog on the internet

Absolute Truths

Jill

This piece by Emily Rapp about reproductive choice and pre-natal testing is a must-read:

I love my son more than any person in the world and his life is of utmost value to me. I don’t regret a single minute of this parenting journey, even though I wake up every morning with my heart breaking, feeling the impending dread of his imminent death. This is one set of absolute truths.

Here’s another: If I had known Ronan had Tay-Sachs (I met with two genetic counselors and had every standard prenatal test available to me, including the one for Tay-Sachs, which did not detect my rare mutation, and therefore I waived the test at my CVS procedure), I would have found out what the disease meant for my then unborn child; I would have talked to parents who are raising (and burying) children with this disease, and then I would have had an abortion. Without question and without regret, although this would have been a different kind of loss to mourn and would by no means have been a cavalier or uncomplicated, heartless decision. I’m so grateful that Ronan is my child. I also wish he’d never been born; no person should suffer in this way—daily seizures, blindness, lack of movement, inability to swallow, a devastated brain—with no hope for a cure. Both of these statements are categorically true; neither one is mutually exclusive.

Read it all.

75 thoughts on Absolute Truths

  1. Thank you so much for posting this here.

    I read her article in the New York Times a few months back, but I don’t think that I knew about her blog. Parenting a severely disabled and terminally ill child can be so isolating, so I really appreciate hearing the stories of other families. I know my daughter and I aren’t the only ones, but it sure feels like that on most days. My most beloved only child, who is 5 years old, has a disease with a similar projection to Tay-Sachs, and she is in a vegetative state. I treasure each day that I can still kiss her little forehead. She has an extremely rare disease, and an extremely unusual disease presentation. There is no family history of this disease and no prenatal test for it. We had a few good years of blissful ignorance before the nightmare began, and then like flipping a light switch, she went from typically developing, meeting all her milestones on time or early, to a steady regression. I am forever grateful for having known her, and I can’t imagine a world without her in it. I get it when Rapp says she would have aborted had she known, but I can’t bring myself to look back. My mother is intellectually disabled and she told me as a child that if she thought that I would be born with a similar disability, she would have aborted me. I am not cognitively disabled, but I was everyday faced with the challenges that life presented my mother. Very early on I had the responsibility of being my mother’s caregiver, so even as a child I understood what lead my mother to say that. Along with the fact that she very likely would have been completely incapable to caring for a child who was intellectually disabled like herself, she also hoped to spare a child pain.

  5. I, too, have nothing but endless sympathy for your suffering and that of your daughter.

    I think my son is going to get extra attention from me after school today.

  6. I really, really dislike articles like these. I’m stridently pro-choice, and the idea that anything could ever force me to have a child against my will is one of the most horrifying things I can imagine. My problem is, bringing the selective abortion of disabled fetuses into the picture turns the whole conversation in a really unfortunate direction. To me, this is about a woman’s right to control what her body does, produces, and to tend to her own healthcare decisions.
    NOT about a potential child’s potential quality of life.
    I’m an autistic woman, and I think I have just as much right to live as anyone. There are plenty of women that have DECIDED to have a child, and even after they find out the child may have a disability, still want the child.
    I hate articles like these because they’re putting the focus back on the fetus. The legislative control of women’s reproductive capacity is unacceptable on every level. I’m talking about everything from cancer screening and birth control access restrictions to forced sterilization and mandatory ultrasounds to denying abortion access.
    To me, this just begs for the fetus worshippers to play the “right to life” card. Actual living human women are much more important to me than fetuses.
    I realize that Taye-Sachs is not a disability so much as it is a painful terminal illness that results in death. It just hurts because I’ve heard so many times from the mothers of autistic people that they wish they could have known beforehand so they could have aborted their fetuses. Or that they fantasize about killing their kids.
    I don’t know, I’m not saying my opinion is right. But I’m a disabled woman of color…I’m what some might call triply undesirable, and my great grandmother came over from Germany in a suitcase during WW2. Anything that smacks of eugenics creeps me out on a very personal level.

  7. We just had this conversation. I’m too tired to have it again. To be brief: I’d be very surprised if it were mothers of disabled kids only who fantasized about tossing them out the window.

    Second, watching a child die and being responsible for the care of a disabled child are about what the pregnant woman wants for her own life.

    I’m an autistic woman, and I think I have just as much right to live as anyone.

    Yes, women have every right to live. Fetuses have no right at all to live unless the pregnant woman wants them to. This has nothing whatsoever to do with their disability status or place on the spectrum.

    There are plenty of women that have DECIDED to have a child, and even after they find out the child may have a disability, still want the child.

    Yes, and there are plenty who don’t. What’s your point here? To divide potential mothers into good mommies and wicked mommies? Yeah. Been down that road before, not interested in going down it again, thanks anyway.

  8. This is a really sad article. It also makes me fucking pissed to think of Santorum and everything he stands for. That, to him, a narrow-minded, fanatical, heartless ideology should trump all other considerations, should be forced on women whether they like it or not, should be forced on women and their children regardless of the horrendous suffering it causes. Rick Santorum would be wise to follow Emily Rapp’s example and realize that there can be absolute truths that seemingly contradict each other; there can be strong, heartfelt feelings and also nuance and a tolerance for ambiguity. Not everything is about inflexible neural pathways in your own brain, Rick, which you mistakingly identify as God. Other people’s lives (rather than your abstract idea of their lives), other people’s experiences, and other people’s choices matter, too.

  9. My problem is, bringing the selective abortion of disabled fetuses into the picture turns the whole conversation in a really unfortunate direction. To me, this is about a woman’s right to control what her body does, produces, and to tend to her own healthcare decisions.
    NOT about a potential child’s potential quality of life.

    But for a lot of women — including the woman who wrote this article — these two things aren’t totally separable. She says herself that she is a woman with a disability. She says that she had no reason to believe that her son would be born with Tay Sachs. But if she had known about his condition, she would have terminated. So yes, here, her choice is squarely on the potential child’s quality of life. We can’t erase that. I also wish that life were clean and simple and we could make statements like “it’s all about a woman’s choice about her body!” and have that be true. I do think that on a legal level, that should be true. But when it comes down to how we talk about these things, and how they actually play out… I don’t think it’s a bad thing to put the diversity of women’s lives and experiences out on the table. This shit is tricky. It is about the lives we live, and our bodies, and our experiences in those bodies, and when and how we want to have children. And for some women, it is about the potential suffering of those children.

  10. It has to be left up to the pregnant women without judgment. There is a pile of social pressure to abort “non-perfect” fetuses, just as much as there is a pile of pressure to bring “non-perfect” fetuses to term. The first is eugenics, the second is denying basic civil rights to women. Neither is right.

    I’ve heard too damn many times these past years “she’s getting tested right?…you know she should get an abortion if….” (and I hear this from self-described liberals – sometimes it makes me envision them in nazi uniforms)

    We’ve unlocked pandora’s box with all the gene sequencing we did and we need to be careful lest we move to a society where there is legal or social pressure to abort, as much as we need to avoid a society where you cannot abort.

  11. First of all, Henry, your points may be interesting but don’t have anything to do with Emily Rapp’s article.

    Secondly, I don’t agree that gene sequencing is opening up Pandora’s box. There is nothing the matter with more information. Amniocentesis should be a publicly funded procedure available to all women, and the more it advances, and the more it can tell them about their potential children, the better.

    Thirdly, I do agree that it’s just as bad to force a woman to have an abortion as it is to force a woman not to have an abortion. And forced abortions are a real problem in many parts of the world, like China, for example. And that’s a problem any pro-choice person would and should be concerned about. I don’t see it becoming a problem in the United States in the forseeable future, however. Due to the prevalence of pro-natalist Christianist ideology here, forcing or shaming women into carry to term is going to be the main problem around abortion in the United States for a long time.

  12. As long as the pro-choice movement wants to divorce the right to choose from the reasons women make choices, it is going to have trouble convincing people that don’t already agree with it. Yes, the legal issue boils down to a woman’s right to control her body, regardless of the motives behind her decisions. But the motives of individual women are the compelling part of the story that takes us out of an abstract discussion of rights and into emotional and personal language people relate to.

    Rick Santorum wants to get up on a soapbox and bleat about prenatal testing, but all it takes to expose how completely divorced from reality his views are is Emily Rapp’s very real story of what she faces as a result of not knowing about her son’s condition while she was pregnant. When Republicans talk about insurance coverage for birth control, the most powerful counterargument is a real woman who was denied that coverage by Georgetown and lost an ovary as a result.

    The reasons a woman chooses to abort or to use contraceptives shouldn’t affect her right to do so. But that doesn’t mean that we should let Republicans sanitize the debate by eliminating discussion of the actual experiences of women.

  13. I also wish that life were clean and simple and we could make statements like “it’s all about a woman’s choice about her body!” and have that be true. I do think that on a legal level, that should be true.

    Exactly, and the article is framed as being “to” Rick Santorum. The guy who thinks that women should never be trusted with any decision regarding her own body, and should apparently remain as ignorant as possible. The guy using his daughter’s disability as a political gambit. i don’t think the answer is doing the same thing right back.
    I do think that the author did in fact have every right to abort if she chose to. In case that wasn’t clear.

  14. To me, this is about a woman’s right to control what her body does, produces, and to tend to her own healthcare decisions.
    NOT about a potential child’s potential quality of life.

    To you. But evidently not to Emily Rapp, a real actual woman who is really actually living and experiencing this real actual situation. And when she tells us about it, you call it “a political gambit”.

  15. To me, this is about a woman’s right to control what her body does, produces, and to tend to her own healthcare decisions.
    NOT about a potential child’s potential quality of life.

    Yeah, well, all women’s reasons for wanting abortions are equal, but some are more equal than others, it sounds like.

  16. Also, GirlJanitor, do you honestly not see the difference between saying “My daughter is disabled and I’m happy I have her so everybody else should be denied the opportunity to decide for themselves what they want to do,” and “My son is dying of an invariably torturous disease, and if I had known this would happen, I would have spared both him and myself the suffering, so everybody should have the foreknowledge and opportunity to do so if they wish”?

  17. To you. But evidently not to Emily Rapp, a real actual woman who is really actually living and experiencing this real actual situation. And when she tells us about it, you call it “a political gambit”.

    Yeah. I am also a real actual woman with real actual experiences. And sometimes I write about my experiences, because I think that in a lot of ways feminism today is facing the challenge that is a slight inverse of second-wave feminism: how to make the political personal again. It is my understanding that the author is doing the same thing, more or less.
    I say “gambit” because it is an article MEANT to start a conversation. And we’re having one. I’m pretty sure that is the intended purpose and definition of gambit in the idiomatic sense.
    And the reason I used this word is because the resulting conversation inevitably makes me feel like a pawn, being torn between my fellow feminists and ridiculous anti-choicers screaming “eugenics!!” and bringing up autism and how we’re a cross women must bear. It makes me feel incredibly marginalized and “othered” in both circumstances.

    EG: I do see the difference. Perhaps I wasn’t clear in my opinion on the matter. It hurts my feelings that so many people don’t.
    I’m tired of people EQUATING people who murder their 7 year old autistic kids, and people who would abort a fetus that is certain to have a terminal defect.
    (you also mention being tired of having this conversation; I haven’t been privy to that outside of this thread. So yeah, I can see that you might be reacting strongly if you’re already used to arguing about it.)

    What I am saying is, the conversation that results from articles like these hurts my feelings.

    Some of you seem to think I’m saying something I’m not saying.

    It is also entirely possible that I am wrong. I’ve been ruminating on it on a lot of levels, because it is true: life is messy, difficult, and full of grey areas. I’m just exhausted by being something that people talk about, rather than a person capable of being a part of the conversation.
    And in my reactionary state, it is entirely possible I have led myself astray. Nobody’s perfect, and I am a bit less perfect than most.

  18. To try and further clarify, the first comment on this thread included:

    My mother is intellectually disabled and she told me as a child that if she thought that I would be born with a similar disability, she would have aborted me. I am not cognitively disabled, but I was everyday faced with the challenges that life presented my mother. Very early on I had the responsibility of being my mother’s caregiver, so even as a child I understood what lead my mother to say that. Along with the fact that she very likely would have been completely incapable to caring for a child who was intellectually disabled like herself, she also hoped to spare a child pain.

    which broke my heart into a million pieces. Because people with disabilities are taught to hate ourselves from a very early age. NOT because I think there should be any restriction on her choices.
    That’s why I hate this conversation.

    Yeah, well, all women’s reasons for wanting abortions are equal, but some are more equal than others, it sounds like.

    No. Some women’s reasons for wanting abortions are excruciatingly painful and sad.

  19. I’m tired of people EQUATING people who murder their 7 year old autistic kids, and people who would abort a fetus that is certain to have a terminal defect….Some of you seem to think I’m saying something I’m not saying.

    Do you not see the contradiction here? Nobody in this thread has defended child-killers of any stripe. Nobody in the 700+ and still going thread below has defended child-killers. You are the one responding to things that nobody’s saying.

  20. I would also add: nobody in this thread or the other has defended the emotional abuse of children (and I don’t know what else you’d call a parent telling his/her child that he/she wishes the kid had never been born). If your point is that doing that kind of thing is horrible and sad, we are in complete agreement.

    In your earlier comment, you tried to divide “what the woman wants for her own life” from “what the child’s life will/may turn out to be.” Because pregnant women are almost always the primary caretakers for the child resulting from that pregnancy, that division simply isn’t possible. “What the child’s life will/may turn out to be” is a major component in determining the next many years of the woman’s own life. The two things are absolutely intertwined, and that means that the pregnant woman absolutely should take into account what the future child is likely to need when she makes her decisions.

  21. I guess I’m having a hard time trying to explain that I have a problem with the FRAMING of the conversation.
    I am fully committed to a woman’s right to abort any fetus she wants to for any reason she sees fit.
    I have a PROBLEM with “see? women should be free to abort BECAUSE having a disabled kid is so shitty.”

    Women should be free to abort. The end.

  22. Except “because watching your child suffer and die before the age of 5 is excruciatingly painful” is not the same thing as “because having a disabled kid is shitty.”

  23. Thank you for linking me to the other thread-I see that there are more people who had the same emotional, visceral response that I did.

    The crappy, unnecessary war between autistic adults and the parents of autistic children has a few very unfortunate intersections with feminist issues, and it’s a difficult place to be.

    I’ll take myself on over there, and yeah. Sorry to divert.

  24. To try and further clarify, the first comment on this thread included:

    My mother is intellectually disabled and she told me as a child that if she thought that I would be born with a similar disability, she would have aborted me. I am not cognitively disabled, but I was everyday faced with the challenges that life presented my mother. Very early on I had the responsibility of being my mother’s caregiver, so even as a child I understood what lead my mother to say that. Along with the fact that she very likely would have been completely incapable to caring for a child who was intellectually disabled like herself, she also hoped to spare a child pain.

    which broke my heart into a million pieces. Because people with disabilities are taught to hate ourselves from a very early age. NOT because I think there should be any restriction on her choices.
    That’s why I hate this conversation.

    @GirlJanitor

    I don’t think my mother hates herself. It’s interesting that this is what you take away from my comment, that my mother’s emotional life is where your focus lies. My mother’s intellectual disability causes real life challenges in the everyday real world. She would not have been able to raise a child born with similar disabilities since her cognitive disabilities prevented her from effectively parenting an able bodied child. Her saying she would have aborted a child disabled like herself wasn’t coming from a place of self-hatred. You say you feel sad for my mother because you believe she was taught to hate herself. Do you also feel sad that her cognitive disabilities make everyday functioning difficult? Are you sad that her girl-child was responsible for taking care of her from a young age?

    I am the daughter, granddaughter and mother of people with serious disabilities. I feel like my real life is getting in the way of your politics. I think you’d rather people like me not share our experiences.

  25. I am the daughter, granddaughter and mother of people with serious disabilities. I feel like my real life is getting in the way of your politics. I think you’d rather people like me not share our experiences.

    Actually, you mentioned that one of her reasons was “she also hoped to spare a child pain.” Implicitly, the pain of being cognitively disabled.

    I honestly have no idea why you would get the impression I want to silence you. Did you expect me not to react emotionally to a story fraught with emotions? It makes me wish I could talk to your mother about her experiences and emotions, because I feel a lot of empathy.

    I am a person with a serious disability. My cognitive differences can make everyday functioning difficult. And I refuse to adopt a submissive, deferential, or apologetic attitude about it. I also refuse to accept that my life is outside the scope of normal human experience. My life is no more painful than anyone else’s; more than some, less than others.

    My politics are no more than a refusal to accept comments based on a faulty assumption: that disability=tragedy and pain. I refuse to accept a role as facilitator, muse, or inspiration for non-disabled people. I’ve come to realize that this is seen as a radical and radically political position. In my real life, all that means is insisting on being treated like a human being.

    I’ve mulled it over quite a bit, and I don’t disagree with anyone here about reproductive rights. I have no interest in policing any woman’s decisions about her body. I have an interest in words that represent human people’s opinions.

    I disagree with the way disability has been presented and talked about in this thread, as well as the other one-whether or not that was “relevant to the original topic” or not.

    My feminism will be intersectional or it will be bullshit.

  26. I honestly have no idea why you would get the impression I want to silence you. Did you expect me not to react emotionally to a story fraught with emotions? It makes me wish I could talk to your mother about her experiences and emotions, because I feel a lot of empathy.

    I believe that’s exactly the point: you feel empathy for her mother but none for her.

    I disagree with the way disability has been presented and talked about in this thread, as well as the other one-whether or not that was “relevant to the original topic” or not.

    Sure. Because why should we actually discuss the reality of women’s reproductive choices as they involve prenatal testing when instead we could make up scenarios about autism and pretend they have anything to do with Santorum’s attacks on women?

  27. I believe that’s exactly the point: you feel empathy for her mother but none for her.

    I think it would be insulting for me to commiserate on what it would be like to have a cognitively disabled mother or a terminally ill child; I have neither. I do have sympathy, however.

    Sure. Because why should we actually discuss the reality of women’s reproductive choices as they involve prenatal testing when instead we could make up scenarios about autism and pretend they have anything to do with Santorum’s attacks on women?

    I’m really kind of amazed how many times I’ve had the words “real life” and “reality” thrown at me. What did I make up?

  28. For one thing, you made up the idea that prenatal testing for autism either exists or is on the horizon.

  29. Donna L, I don’t see where she said that BUT there IS potential testing for autism:

    http://www.news-medical.net/news/2009/01/12/44865.aspx

    Again, so WHAT?! If a pregnant person gets the prenatal test for autism and aborts BECAUSE of that what’s wrong with that? Absolutely nothing. It’s zer right to do so and there is absolutely nothing wrong with exercising that right.

  30. And just in case you don’t trust the credibility of that source here s an academic source that confirms prenatal testing for autism.

    Geier, D. A., & Geier, M. R. (2007). A prospective study of thimerosal-containing Rho(D)-immune globulin administration as a risk factor for autistic disorders. Journal Of Maternal-Fetal & Neonatal Medicine, 20(5), 385-390.

  31. @GirlJanitor

    Some disabled people, like my mother, doexperience their disability as a source of pain and suffering. That does not mean that she hates herself. This is outside of the social construction of her disability.

    I get the impression that it’s not okay to think that your disability doesn’t define you and that it kind of sucks. Also, that it’s not okay to talk about any pain you may experience as the loved one of a PWD, because of said disability.

    It seems like it’s only okay to talk about my mother’s emotional life as it relates to how the world sees her and her disability, and not about the tangle difficulties of daily living. It’s as if you are asking that one should only voice their anecdotal experience when it conforms to a certain political posturing.

  32. Donna L, I don’t see where she said that BUT there IS potential testing for autism:

    http://www.news-medical.net/news/2009/01/12/44865.aspx

    She brought it up in the other gigantic thread.

    That said, that article is from three years ago, and nothing has hit mainstream news since (every mainstream news source that came up when I googled is from that same month, January 2009; more recent stuff comes from pro-forced-birth websites and prospective mothers asking each other hypothetical questions on chatboards and suchlike), suggesting that there was some kind of breakthrough then that either didn’t pan out on further study or has yet to be confirmed either way. What that says to me is that hand-wringing about prenatal testing for autism has nothing to do with here-and-now concerns about women’s right to medical care and knowledge about our own bodies being abridged, and so indulging it on a thread about prenatal testing and Santorum’s attack on it is a derail about the commenter’s own concerns and interests, but not about the actual topic.

  33. EG
    The medical journal says you can test for it, but it isn’t routine. I say there is ABSOLUTELY nothing wrong with testing for autism. Even ADD/ADHD. would be ok. Abortion terminates pregnancies not people so it really doesn’t matter.

  34. No, it doesn’t. The medical journal article says that exposure to thimerosol in the womb seems to be a risk factor for the fetus later developing an autism-spectrum disorder. It says nothing about prenatal testing. Here’s a link to the abstract. The January 2009 articles all quote Dr. Simon Baron-Cohen, whom they keep referring to as a leading autism research specialist, as saying that “we” have to examine the ethical issues involved in developing a prenatal test and figure out if we want one.

    I do agree that I would have no problem with such a test or any decisions on the part of the pregnant woman resulting from it. But there is no such test yet in existence.

  35. @Azalea

    I think that your first link (the news-medical.net one) is for this study:

    Auyeung B, Baron-Cohen S, Ashwin E, Knickmeyer R, Taylor K, Hackett G. (2009). Fetal testosterone and autistic traits. Br J Psychol. Feb;100(Pt 1):1-22. Epub 2008 Jun 10.

    I know enough to know that Simon Baron-Cohen is controversial in the autism field, but that’s all I do know. In any case, the study posits an association between prenatal androgen exposure and autistic traits, using a very small and unrepresentative sample. The Guardian (January 11, 2009) and a bunch of other British newspapers at the same time also cite Simon Baron-Cohen talking about prenatal testing for autism related to his study, but I just don’t see how he got from a (rather statistically doubtful, in my opinion) association between fetal testosterone and autistic traits to using “amniocentesis…to detect autism”.

    As for this one

    Geier, D. A., & Geier, M. R. (2007). A prospective study of thimerosal-containing Rho(D)-immune globulin administration as a risk factor for autistic disorders. Journal Of Maternal-Fetal & Neonatal Medicine, 20(5), 385-390.

    That’s not an academic source. That’s the Geiers. The Maryland Medical Board suspended Mark Geier’s license in 2011 for treating autistic children with Lupron and chelation drugs. If the Geiers told me that 1 + 1 = 2, I’d count on my fingers to check.

    Besides which, the study claims to have found that the mothers in the study who had children with autism spectrum disorders had been exposed to thimerosal-containing Rho(D)-immune globulins during pregnancy. That’s also not prenatal testing.

    So based on this, plus Google results similar to EG’s, it seems to me that DonnaL is right: prenatal testing for autism does not exist and is not on the horizon.

  36. I didn’t read the abstract, I read the actual paper. Ill give you a better link but I still have access to academic libraries so I’ll give citations in lieu of links. Also Giers wrote that for the Journal of Maternal-Fetal and Neonatal medicine.

    But alas my point was no fetus, regardless of it’s status as POTENTIALLY being a minority or member of a protected class after birth, has a right to be born therefore no controversy should be entertained for its destructio. No mattr the reason.

  37. I completely agree, Azalea. If such a test were available, a woman should have the right to have it, and make use of the results as she sees fit. But it’s a bit premature for people to be using the hypothetical future existence of such a test — which sounds as if it would reveal only the possibility or potentiality of autism, not a certainty by any means — as an excuse to hijack the entire subject of prenatal testing.

    I would be equally bothered by anyone who posited the availability of prenatal testing for being gay or being trans, and then argued that it would potentially result in the genocide of LGBT people. An argument I would vehemently disagree with, but which is nothing but a waste of time: not only isn’t there such a test, but I’m entirely confident that there won’t be one in the lifetime of anyone here. And even if there were a prenatal test for (say) transness, and even if it did show actual transness rather than simply a potential for same, and even if the rate of false positives were only 1 in 100, there would be far more “positives” who turned out to be cis than turned out to be trans, given the tiny percentage of trans people in the overall population.

    (I’m not suggesting that there’s anything inherently disabling in any way about being LGBT, by the way, or that the difficulties of being LGBT result from anything other than societal prejudice. The same is simply not true of many actual disabilities — including my own. I speak from experience.)

  38. If the abstract is saying something radically different than the paper, then the journal’s got some major problems.

  39. Also, that it’s not okay to talk about any pain you may experience as the loved one of a PWD, because of said disability.

    I’m pretty sure I said the opposite of that.

    It’s as if you are asking that one should only voice their anecdotal experience when it conforms to a certain political posturing.

    Political posturing, my actual lived experience, whatever, right?
    I’m pretty much done with this now.

    I support abortion for any reason.

    This has been an intersectional failure.

  40. I’m pretty much done with this now….This has been an intersectional failure.

    You asked what you made up; people told you. Now you’re done engaging? Fine, but in that case the problem isn’t lack of intersectionality.

  41. Only tangentially connected, but I believe it is worth pointing to. This alarming article was published in a peer-reviewed journal of medical ethics. It triggered a lot of backlash both from the academic community and from casual readers, yet the editors insist on defending their choice of publishing it.

    Abstract
    Abortion is largely accepted even for reasons that do not have anything to do with the fetus’ health. By showing that (1) both fetuses and newborns do not have the same moral status as actual persons, (2) the fact that both are potential persons is morally irrelevant and (3) adoption is not always in the best interest of actual people, the authors argue that what we call ‘after-birth abortion’ (killing a newborn) should be permissible in all the cases where abortion is, including cases where the newborn is not disabled.

    The rest of the paper is so absurdly eugenic and anti-life (on top of being inconsistently argued), I was appalled to no end.

  42. I’m all the more angered because this kind vileness enables pro-lifers to use the argument that foetus = new born in their fight to restrict and recriminalize abortions. The half-assed article fails to redefine personhood in spite of rejecting the standard ethical agreement on the beginning of personhood.

  43. So here is another link for you. This isn’t a hypothetical, there are companes who currently offer prenatal testing, by request only for autism. There are genetic markers for autism. These tests are made controversial by forced birthers who try to make it seem like eugenics. They aren’t available everywhere to every pregnant person but they should be.

    DonnaL I don’t know about a test for sexuality or transness but there most certianly have been research in trying to determine any differences or similarities in chemical reactions and biology of heterosexuals and homosexuals. The furthest I think they got was a very very similar brain reaction from hetero women and homosexual men when presented wth sexually stimulating images of men. I’ll try to get that link for you. But there is something “apologetic” about the insistence that there isn’t a test for that now or in the works as f such a test would be problematic. It isn’t. Fetuses don’t have a right to be born regardless of their potential.

  44. There’s no link in your comment, Azalea.

    I disagree that there’s something apologetic about pointing out that making things up does nothing but derail the conversation. We can all invent hypothetical situations that would make other people uncomfortable (what if a woman decides to get an abortion at the 8th month because she decides she’d rather get a pet dog?), but unless those situations have any grounding in reality, admitting them to the discussion does nothing but distract from the real issues facing women who are making choices about their reproductive health.

    It’s like asking “how many angels can dance on the head of a pin?” Who cares? I don’t believe in angels, and I can’t see any reason why they would dance on the head of a pin if they did exist.

  45. Only tangentially connected, but I believe it is worth pointing to. This alarming article was published in a peer-reviewed journal of medical ethics. It triggered a lot of backlash both from the academic community and from casual readers, yet the editors insist on defending their choice of publishing it.

    But they do make a fair point though.

    I mean what really is the difference between a fetus in the womb and then five minutes later after being born, a baby outside the womb? Can we really say that because it’s been through a birth canal or out of a c-section or whatever that it now automatically gets all the rights of humans?

    I mean I am pro-choice and I’m also anti-killing-babies but it is a logical conundrum indeed.

  46. Here is the only article I can find about genetic testing for autism. It is referring to the genetic testing of actual born people who may or may not have autism, and it is linked to phenotypical manifestations that are associated with autism. It says nothing about prenatal screening.

    I mean what really is the difference between a fetus in the womb and then five minutes later after being born, a baby outside the womb? Can we really say that because it’s been through a birth canal or out of a c-section or whatever that it now automatically gets all the rights of humans?

    1) Yes, we can. Once it is no longer using somebody else’s body to survive, its rights can come into play.
    2) How does it matter? There is not exactly a rash of women trying to abort five minutes prior to delivery, or even one month prior to delivery. All these philosophical maunderings are based on the idea that if we don’t control women, they’ll just run around getting abortions in the third trimester left, right, and center. And that’s just not true.

  47. But a born baby still arguably needs to use someone else’s body to survive. I mean put a baby on its own and it won’t know what the heck is going on.

  48. But a born baby still arguably needs to use someone else’s body to survive. I mean put a baby on its own and it won’t know what the heck is going on.

    But it doesn’t need mine. It is not actually physically using my body whether I want it to or not. I can choose to care for it or put it up for adoption.

  49. You also haven’t addressed the issue that it doesn’t matter, because women do not seek abortions five minutes prior to delivery. It’s not a thing that happens. When women seek abortions in the third trimester, it’s because of something truly horrific, and I’m not going to sit around splitting hairs with them about it.

  50. There is not exactly a rash of women trying to abort five minutes prior to delivery, or even one month prior to delivery.

    Exactly. The argument is a complete red herring. Of course a baby is a baby five minutes before full-term delivery and it can’t be “aborted,” because at that point it’s fully-developed, no longer dependent on the mother’s body, and can survive outside the mother’s body. It’s just a slightly premature delivery. There’s really no such thing as an abortion at that point, under Roe v. Wade or any other theory. I doubt that too many women have ever requested one — “doctor, I changed my mind, I know I’m in labor and the baby’s about to come out, but could you please kill it instead, because I just decided that babies are too much trouble?” — or that any doctor has ever “performed” one. Yeah, right, all those liberal atheistic baby-killing mothers and doctors who murder babies and then probably eat them too, right along with the placentas.

    And of course there’s no perfect way of drawing the line. Five minutes before full-term delivery, it’s a baby. A clump of cells early in the first trimester isn’t a baby. Exactly where one draws the line, whether it’s at viability without extraordinary intervention or elsewhere, is not for me to draw, and probably isn’t for the law to draw — as opposed to women themselves — except in extremely broad terms. (Which is exactly what Roe v. Wade did.)

  51. Well sure it’s a non issue in a real world sense but it’s interesting to think about.

    Do you think people get rights simply by virtue of being human with human biology and things? Or do you think they get rights because they have feelings and emotional needs and such like?

  52. I think that human feelings and emotional needs are part of human biology, and I also don’t find abstract philosophical conversations that compelling. Which rights, which person, which biology? Otherwise it’s just so much angels dancing on the head of a pin nonsense.

  53. Yeah indeed I also think that human feelings and emotions are part of biology. I don’t believe in this floating head stuff.

    But does a person get rights by virtue of having human feelings and emotions or does they get get rights by virtue of having a human body. Like is a person who is definitely 100% going to be a vegetable for the rest of their lives have the same rights as a person who is not? And I’ve posited this one before but I’ll do it again. What about aliens of human level sentience who can communicate with us and be like totally normal? Do they get equal rights with us? Because a humanist would say, no, they shouldn’t get rights because they’re not human. But I think humanism is deficient.

  54. I utterly disagree with you, Chiara. There is all the difference in the world between a fetus and a born baby. That difference is called being born.

    I didn’t “make up” the billions of fundraising dollars diverted from services for actual living people with autism and funneled into research for a prenatal test for autism. There is a huge problem with the idea of “curing” autism, the infantilization of autism in “charitable” organizations and the media, and the medical model of autism and other disabilities that is incredibly harmful to real, actual people living with disabilities.
    To have these degrading perceptions of disability parroted in what I’d like to consider a center of progressive and open thought is incredibly painful to me. To be told I’m inherently somehow disconnected with reality-gee, never heard THAT one before! Just because I refuse to accept that living with a disability renders me somehow outside the discourse on reproductive rights, just because I’m calling out some pretty damn ableist comments, does not mean that I’m making things up.

    MY LIFE IS NOT AN ABSTRACT PHILOSOPHICAL CONVERSATION. MY LIFE AND MY HUMAN RIGHTS ARE NOT ABNORMAL, OUTSIDE THE REALM OF “REAL” EXPERIENCE, OR INVALID.

    What about aliens of human level sentience who can communicate with us and be like totally normal?

    THAT is an abstract “angels on a pin” red herring derail.

    THIS is a real thing that happens to real people in their real lives:

    Ableism is a form of discrimination or prejudice against individuals with physical, mental, or developmental disabilities that is characterized by the belief that these individuals need to be fixed or cannot function as full members of society (Castañeda & Peters, 2000). As a result of these assumptions, individuals with disabilities are commonly viewed as being abnormal rather than as members of a distinct minority community (Olkin & Pledger, 2003; Reid & Knight, 2006). Because disability status has been viewed as a defect rather than a dimension of difference, disability has not been widely recognized as a multicultural concern by the general public as well as by counselor educators and practitioners.

    Laura Smith, Pamela F. Foley, and Michael P. Chaney, “Addressing Classism, Ableism, and Heterosexism in Counselor Education”, Journal of Counseling & Development, Summer 2008, Volume 86, pp 303-309.

    It is WRONG to frame a conversation about prenatal testing this way. It is WRONG to say, “women should have access to prenatal testing because children with disabilities=burden for women.”

    Women should have access to prenatal testing because we ALL have a right to make FULLY INFORMED DECISIONS, whatever that may mean to US.

    I’m really at the point where it is becoming clear to me that most people would much rather pigeonhole me as a “forced-birther” than examine their own privileged assumptions.

    My problem is that it seems like so many people are stepping onto Rick Santorum’s dancefloor: HE wants reproductive rights to be about the (relative) value of human life, and it IS NOT. Arguing in favor of abortion access in those terms is just as bad as arguing against it in those terms.
    THAT IS WHY HE BROUGHT THAT SHIT UP IN THE FIRST PLACE.
    AND I AM SO COMPLETELY ENRAGED TO SEE ALL OF YOU ARGUING ON RICK SANTORUM’S TERMS.

  55. Women should have access to prenatal testing because we ALL have a right to make FULLY INFORMED DECISIONS, whatever that may mean to US.

    If I could embroider, that would go on a pillow.

  56. Pingback: The Danger of Flame Wars « Adventures of a Girl Janitor

  57. Chiara:

    What about aliens of human level sentience who can communicate with us and be like totally normal?

    If and when they ever show themselves, in a concrete way with all the specifics ironed out so that it’s not just a “what if” this and a “what if” that, I’ll worry about it. Until then, meh, I just don’t care. I mean, what about elves? Do they get human rights? What about intelligent unicorns? Does it matter if they neigh or speak English? What about dragons? They’re very cunning, and they can burn us alive if they don’t like our decisions. They’re all about as relevant as each other.

    JanitorGirl:

    I didn’t “make up” the billions of fundraising dollars diverted from services for actual living people with autism and funneled into research for a prenatal test for autism

    Accepting that those avenues are in competition with each other for funds is just some capitalist bullshit right there. I’d say that it’s corporate welfare and military spending that’s taking the money away from services.

    Just because I refuse to accept that living with a disability renders me somehow outside the discourse on reproductive rights, just because I’m calling out some pretty damn ableist comments, does not mean that I’m making things up.

    No, but demanding that everyone drop what they’re doing and stop discussing Tay-Sachs in order to discuss the potential effects of a test that does not exist and you have made up is some entitled bullshit. If and when that test is developed, I’m interested in having the conversation, because they we have some concrete things to discuss. How is the test done? At what stage of pregnancy is it done? What is its rate of false positives? What is its rate of false negatives? Is it able to distinguish among varieties and degrees of severity of autism? How accurately? What are the risks of having the test done? Can better preparations for assisting the resulting baby if the woman decides to carry to term be made on the basis of the test?

    Without answers to those specific questions, there is no way to assess or discuss risk-benefit scenarios, and all you’ve got is some handwringing about how we are all cool with aborting everyone who would develop autism.

    “women should have access to prenatal testing because children with disabilities=burden for women.”

    Having a child with Tay-Sachs is a heart-wrenching, gut-wrenching experience. I’m sorry that you don’t like to see a mother discussing that in print, but it doesn’t make it less true. Having to provide and advocate for intensive and unusual services is a burden on the primary caretaker, and primary caretakers are almost always women. Taking on a burden joyfully and/or finding it worthwhile, as I would expect almost all parents do, does not mean that it’s not a burden.

    HE wants reproductive rights to be about the (relative) value of human life, and it IS NOT. Arguing in favor of abortion access in those terms is just as bad as arguing against it in those terms.

    Except nobody arguing in favor of prenatal testing has said anything about the relative value of human life. Not once. We’ve all been discussing women’s desires, values, and experiences.

  58. Why would aborting an autistic fetus make someone uncomfortable?

    But anywhere here is the link:

    http://www.lineagen.com/Scientific-Programs/Autism-Spectrum-Disorder.aspx

    I didn’t make shit up. I know women who only ound out about the possibilty of such testing AFTER they had already given birth to autistic children, they wish they had known better. There is absolutely nothing wrong with that and this “..oohh but that doesn’t exist/isn’t a potential and probably wont either” is bullshit. So fucking what that it exists, so fucking what that it’s a possibility. Forced birthers and ther rhetoric is the reason this shit is so hard to find in the first fucking place. This isn’t about a derail; my stance has been that an abortion for ANY reason is ok because it’s the pregnant person’s life and body. A fetus is not a person so the discomfort just feeds into pro-life bullshit.

  59. That link says nothing about prenatal testing. It doesn’t even say that it can confirm that its genetic testing is solid. It says, “Lineagen is leading two major research initiatives to discover genetic markers associated with autism and disorders of childhood development….The genetic markers discovered from these studies are currently being “replicated” in a 9,000-person study at the Children’s Hospital of Philadelphia. Since these markers were discovered in families, it is important to understand if they are present in other people with autism, and this type of study is often referred to as “replication.”

    The results of this program are expected to be published in the fourth-quarter of 2011/first-quarter of 2012 timeframe.

    [emphasis added]”

    “The Children’s Hospital of Philadelphia (CHOP) is a leader in autism research. In 2009, CHOP published the results of one of the largest autism studies ever performed. TIME magazine rated these discoveries as one of the top ten medical breakthroughs of 2009. These genetic markers fully doubled our understanding of the genetic basis for autism. Lineagen is sponsoring research with CHOP to develop industry leading molecular and genetic diagnostic tests based on these discoveries…”

    No such tests yet exist. Therefore the insistence on discussing them is nothing but derailing conversation about women’s reproductive realities in the here and now.

  61. Azalea, I agree with your conclusion that the reasons for terminating a pregnancy don’t matter, but your underlying premise that a prenatal test for autism exists is clearly and entirely false, and the link you just posted proves it.

    Why? Because the website you directed us to must say 50 times that it’s a test for children who’ve already been diagnosed with autism, to see if they carry a particular trait that’s associated with 15-20% of children with autism:

    Today, approximately 15-20% of children with autism have an associated genetic trait that can be identified using advanced testing methodology.

    The results of genetic testing may be critical because, when used together as part of a comprehensive clinical evaluation, they may help to identify genetic variants in children with autism and developmental delay much sooner than is possible through behavioral observation alone.

    Notice that there’s no mention of what percentage of children who carry the same genetic trait aren’t autistic. Unless that percentage were extremely low, approaching zero, I don’t see how the test could ever be used prenatally — even apart from the fact that even if there were no “false positives,” the test would identify only 15-20% of autistic children. All of which shows how incredibly disingenuous it is for you to insist, based on the existence of this product, that there’s already prenatal testing for autism available. Would it make any difference in the abortion debate if such a test did exist? Not to me; of course not. But to the Santorums, it would be just another reason to oppose the widespread availability of prenatal testing. Therefore, it’s not only a waste of time and a derail, but extremely counterproductive as a practical matter, to discuss such tests as if they exist. Which your own link proves is not the case.

  63. Also, every controversy I see concernng the test uses Santorum rhetoric about how such a thing would “rid the world of” children with those conditions, as if pregnant people are a monolith who all make the same decisions.

    Any disease with a biomedical component ought to have a prenatal test available or in the works. Anyone’s discomfort with an abortion of a fetus that has or is more likely to have such a disease can take solace in the fact that if they took such a test in their own pregnancy they can choose not to abort. Someone has already said it but framing this in terms of “oohh this disease is so bad, what good mother wouldn’t abort?” takes away from the fact that it should be her right to do so without being judged or the need to defend it period. Roe v. Wade became the landmark case it is today because Roe wanted an abortion, not because there was a medical need or to rectify a crime against her (rape or incest). THAT is the type of reproductive justice that should still exist. No excuses, no defending. It is what it is and damn you if you don’t like it.

  64. I’m not insisiting on discussing them. I am insisting that this vibe of how such a test would be a horrible thing that *yay* doesn’t exist yet is bullshit. Most autistic children are NOT high functioning and the worse end where non verbal children lie is pretty fucking horrific. But even if it were not that bad, even if a larger number of children with autism were high functioning, why would that make a test controversial? Why the tiptoeing?

    Lineagen focuses on three primary medical conditions: autism spectrum disorder (ASD) and developmental delay (DD), multiple sclerosis (MS), and chronic obstructive pulmonary disease (COPD). In each of these areas, Lineagen is performing unique research to identify genetic markers that can be used as the basis for molecular diagnostic tests and/or as therapeutic or drug targets. Lineagen has developed broad intellectual property portfolios in each of these areas.

    And what exactly do you think they plan on doing with this information in an age where the possibility of a test started with something a lot less concrete like testerone levels?

    Also there are numerous news articles about the possiblity of a test based on testosterone levels dscovered during amniocentesis.

  65. Yep, there’re lots of possibilities. And when one of them comes to fruition, I will care. There’re always lots of possibilities–that’s how research works. But that doesn’t mean any single one of them will pan out. Bearing in mind that this is their own website, so they’re going to be presenting the potential of their own research in as generous and positive a way as possible, I’d say that if they were close, they’d say.

    And what exactly do you think they plan on doing with this information in an age where the possibility of a test started with something a lot less concrete like testerone levels?

    Well, they say they’re interested in targeted treatments as well as diagnostic tests (though I notice they don’t say prenatal), so I’d say they’re keeping their options open and don’t want to be held to anything specific, because they don’t really know what might come of it, but they want to cover all their bases.

    I’m not insisiting on discussing them.

    No, GirlJanitor has been, in this thread and the other one, which is why I was addressing her with comment #57. You can tell, because of the way I use her name and quote her comments.

    I am insisting that this vibe of how such a test would be a horrible thing that *yay* doesn’t exist yet is bullshit. Most autistic children are NOT high functioning and the worse end where non verbal children lie is pretty fucking horrific. But even if it were not that bad, even if a larger number of children with autism were high functioning, why would that make a test controversial? Why the tiptoeing?

    What tiptoeing? What vibe? I haven’t said that a test would be a horrible thing and yay it doesn’t exist. Nobody has. I’ve said that talking about some bullshit future possible test about which nobody knows the specific answers to the questions I pose above is not actually a relevant issue. When a test exists, I’ll bother to talk about it. Until then, would it be too much to ask that we talk about the issues women are actually grappling with?

  66. The issue here is the BS women have to deal with from people who see controversy or moral qualms with the decisions pregnant women make post prenatal testing. I think, regardless of what the test is for, it has no controversy. It’s her personal decision and as pro-choice people it’s as simple as that; her decison.

    It’s pretty clear that Santorum & Co. don’t really care about childen, the issue is gaining control over something they have no control over as well they shouldn’t; the reproductive decisions of pregnant people.

    As I said, pregnant women aren’t a monolith, not everyone makes the same decisions with the same informaton and the same set of circumstances.

    I don’t see why anything you’d have to say about that would be different than anything you’re saying here. A prenatal test and an abortion based on the results of the test is a woman’s choice and has no controversy or moral issue.

  67. I agree with every single thing you just wrote, but I also get very, very tired of reading bullshit arguments about what about when women want to abort because prenatal tests show that the baby would have blue eyes or like science fiction or something like that. It seems pretty clear to me that those arguments are basically admitting that what women do in the here and now is totally reasonable, and conjuring up the specter of a hypothetical future in which women are abortion-crazed maniacs is one of the ways they can try to discredit us and distract people from what women are actually doing. So I think it’s important to deflate those arguments at every single turn, by pointing out that they’re imaginary and so don’t provide us with any details that would actually inform real women’s decisions.

  68. I agree with every single thing you just wrote, but I also get very, very tired of reading bullshit arguments about what about when women want to abort because prenatal tests show that the baby would have blue eyes or like science fiction or something like that.

    I disagree with this position and think it is important to address the principle. In the future many more genetic conditions than today will be detectable and the questions will arise.

    I think we should just agree that we should simply let the women take whatever decisions they want using the best information available. Regardless of what kind of information will be available in the future, it has no impact on this principle.

    As you say: Women in general are not abortion-crazed maniacs and will generally choose to abort for good reasons. Why not just accept any societal impact of their collective decisions as democracy in action? (And in the improbable scenario where this would become a real problem we could address it at that time)

    It can be a problem to base your moral position on the current state of medical science. For example when discussing where the cut-off for late abortions should be many jurisdictions have chosen a criteria along the lines of “when the fetus could survive without the mother”. If that is accepted, it means that the right to abortion would in principle keep shrinking as science advances. I do not think that is a position that makes a lot of sense.

  69. It can be a problem to base your moral position on the current state of medical science.

    I’m not basing a moral position on medical science. I am arguing for discussions that are reality-based, not based on imaginary projections into the future. Look, for instance, at this thread, which was about Tay-Sachs and the suffering that accompanies it. Instead of discussing the very real and painful situations that Rapp and trees are in, and how they can be prevented, we’ve spent the whole thread talking about imaginary autism screenings. I find that offensive and dismissive of actual women facing actual decisions.

  70. @EG: Ok. I guess I was bringing up an abstract issue of principle just after you had declared that you were not interested in discussing abstract principles, which may have been a bit inconsiderate.

    I will just drop it now.

  71. Women should have access to prenatal testing because we ALL have a right to make FULLY INFORMED DECISIONS, whatever that may mean to US.

    Well yes, of course!!

    I thought that went without saying.

  72. As I’ve iterated over many times, I think that peeps should the right to whatever screenings or abortions or whatever concerning their own body.

    But I think it’ll be a very scary day indeed when people are genetically molding their children to have the most genetically ‘perfect’ child or even growing children outside of wombs. I mean arguably if it’s possible… it shouldn’t be made illegal… but it’s very chilling, very much Brave New World.

  73. that disability=tragedy and pain

    It frequently does. Do you not understand how cruel it is for the non-neurotypical crowd to flounce around into the settings with the more seriously impaired with attitudes like yours? Are you *trying* to make people feel bad? Do you realize that you are setting up a hierarchy of the truly broken and you cool kids that are just atypical. But y’know we aren’t even supposed to acknowledge that being invalids and cripples (for want of better terms now that disability covers everything), sucks ass, because you don’t like it.

    Do you have any idea what you are doing to us? Do you think this doesn’t make it harder? I’d rather deal with blatant hostility from TABs, it is easier.

  74. Funny how all these assholes who care *so* much about the potential lives of potential children can’t be bothered to start funds for scientific research to cure such horrific and tragic diseases.

  75. I agree with every single thing you just wrote, but I also get very, very tired of reading bullshit arguments about what about when women want to abort because prenatal tests show that the baby would have blue eyes or like science fiction or something like that. It seems pretty clear to me that those arguments are basically admitting that what women do in the here and now is totally reasonable, and conjuring up the specter of a hypothetical future in which women are abortion-crazed maniacs is one of the ways they can try to discredit us and distract people from what women are actually doing. So I think it’s important to deflate those arguments at every single turn, by pointing out that they’re imaginary and so don’t provide us with any details that would actually inform real women’s decisions.

    If it’s about making “designer babies” that sort of thing could be determined in a fertility clinic before implantation. Genetic testing for certain physical traits or even sex-selection (sex testing does exist pre-implantation and there is a way to increase your chances of having a desired sex before fertilization) but again, there isn’t some National Organization of Abortion/Designer Baby Crazed Womb Barers sitting around writing a list for which fetuses will be aborted/which embryos will be implanted vs. which ones will be carried to term.So the idea that there will be a real world impact only comes into question when examining culturally inspired -isms manifested in reproduction choices; ie sex selection in specific parts of Asia. Even then, the discussions should focus on the society that may be influencing those decisions and not the morality or “ethics” of those abortions.

Comments are currently closed.