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Palin and Disability Advocacy

Jill

The big news this week is that Sarah Palin is the latest contributor to Fox News. Christina Chew at Care2 asks what this means for people with disabilities — Palin promised in her campaign to be an advocate for special-needs children, but so far her “advocacy” hasn’t gone far beyond insisting that abortion is bad and special-needs children are blessings. While I’m always happy to see parents of children with disabilities speaking out about the fact that having a special-needs child is parenting all the same and that no child is perfect or easy, there is a major disconnect when “advocates” like Palin totally ignore the societal and structural impediments that make parenting more difficult when your child has disabilities, and that make life more difficult for individuals with disabilities. Chew writes:

Will Palin, who has spoken regularly about her “right to life” stance, make abortion and prenatal genetic testing of her Fox News commentary? (Currently some 90% of parents who find out that their fetus has Down Syndrome decide not to have the child.) Will Palin move beyond such politically charged and very hot topics to look at the real, day-to-day issues facing disabled individuals and their families and those who support them over their lifetimes? Issues like the need for appropriate schools and therapies that can range from speech therapy to medical concerns; like the urgent need for housing for adults with disabilities, not to mention jobs and job training, and—for those unable to work—ways to ensure that they live meaningful lives within the community?

As the mother of an adolescent son who is on the moderate to severe end of the autism spectrum, I am hopeful that Palin will use her new role on Fox News to bring national attention to these pressing issues. My son is growing up all too fast. While once people smiled and told me “he’s so cute” and that we were “blessed to have such a special child,” the world is not so kindly towards an older child who is so tall that he is regularly mistaken for an adult, who is minimally verbal, and who—due to his neurology—struggles with severe behavior problems. Group homes, job coaches, and disparities in access to health care for adults with disabilities are just some of the issues that other parents, my son’s teachers and therapists, and my husband and I think about all the time, however much others try to change the topic of conversation when we bring them up.

Improving on those issues would also make it easier for women to choose to continue pregnancies if their fetus is diagnosed with Down syndrome or other condition. As Dana Goldstein explores in the Daily Beast this week, new genetic testing could make it possible to more exactly identify fetuses with Down syndrome; since the vast majority of women terminate their pregnancies when they learn that the fetus has Down syndrome, the new tests could mean that even fewer babies with Down syndrome are ever born, unless women and families feel that having a special needs child is actually do-able.

I’m obviously very pro-choice, and support the right of any individual woman to terminate a pregnancy for whatever reason. I understand the feeling — or the knowledge — that you are not equipped to handle a child with special needs, or the fear that when you die you will be leaving behind a child with a disability in a society that offers little support. So I want to make it clear that I’m not casting judgment on any individual woman, or any family, who makes the best choices for themselves and terminates a pregnancy because the fetus has Down syndrome or other pre-natal diagnosis.

But. I do find it troubling, in the aggregate, that so many people believe that having a child with Down syndrome is so impossible, or so undesireable, that 90% of those pregnancies are terminated. Again, to clarify, it’s not the belief itself that troubles me — it’s the social reality underlying that belief. It’s the fact that “advocates” like Palin do little to actually advocate for what people with disabilities and their families actually need — holding up a cute baby and talking about how he’s a blessing is nice, but it doesn’t do much to help the parents who are worried about finding adequate schooling for their children, or the adults who need basic access to work or housing or medical care. It doesn’t do much for the women who receive a pre-natal diagnosis from a doctor who assumes that termination is the next step, in a society that seems to only offer two options for women who have to make this choice: Martyrdom or shame. It doesn’t do much for that cute baby when he or she grows up in a society that ostracizes and fears him, and offers no tangible support or assistance.

I hope Palin uses her position at Fox to give a platform to disability-rights advocates. I hope she does it in a meaningful way, that goes beyond, “Look, cute baby!” and actually addresses the structural impediments that oppress people with disabilities. But I’m not holding my breath.

62 thoughts on Palin and Disability Advocacy

  1. (minor side note)
    It’s worth remembering that the percentage of terminations in cases of Down’s Syndrome is moderately skewed to begin with, since couples who are certain that they will keep a child no matter what the diagnosis usually decline to have the test as amniocentesis (sp?) carries a small risk of miscarriage.

  2. Christina Chew’s words really hit home with me. My brother, now age 62, is a high-functioning autistic. When he was a teenager, that category didn’t even exist. He was just thought of as weird. Other students would bully and assault him at will (he once was left bleeding from a head wound, courtesy of a brick someone tossed at him as he sat on the toilet), and the school did absolutely nothing. One school official told our father, “You see, John really bugs those kids.” Eventually, they pressured my parents into pulling him out of school.

    As for Sarah Palin, I’m quite confident that her “advocacy” of Down’s Syndrome children will begin and end with shaming their mothers out of having abortions. Doing anything more, of course, would require “transferring wealth,” and God knows we can’t have that.

  3. Standing up and being someone who has a Down’s child is meaningful. People learn from example and they set their expectations based on what they observe. In a society where everyone aborts Down’s babies, you have to be crazy or extremely strong-willed not to. The more people like Palin (in this narrow sense) there are, the easier it becomes to decide to follow that path. The Overton Window is framed in large part based on what people really do.

    1. Guy in Denver, sure, but Palin is in a position to do much more than that. She’s also billing herself as an “advocate.” Given that, it’s pretty fair to expect that she’ll do more than just stand up and say she has a child with Down syndrome.

  4. You hit the nail on the head with, “Improving on those issues would also make it easier for women to choose to continue pregnancies if their fetus is diagnosed with Down syndrome or other condition.” People terminate pregnancies because having a child or family member with a disability can be really effing difficult in the United States. Make it less difficult, and it seems extremely likely fewer women will choose to abort. Seems like a no-brainer for Palin.

  5. I think you are focused on the wrong number. Women who decide they CAN, in their present circumstances, parent a child with Down syndrome, generally don’t get the test done. There would be no benefit and a small risk to a fetus she has already decided to carry to term. If anything, I’m surprised that of those who choose to test, any change their minds and carry to term. Because, I would think these decisions would be made *before* the test, which does carry some risk to the fetus regarding miscarriage, would ever be done.

    1. I think you are focused on the wrong number. Women who decide they CAN, in their present circumstances, parent a child with Down syndrome, generally don’t get the test done.

      I actually don’t know if that’s true. I think a lot of women at least want to know first, and then decide whether or not to terminate next. Even if a woman is pretty sure she will continue the pregnancy no matter what, she may very well want to prepare herself and her family in case the pregnancy isn’t “normal.”

  6. Well, we could make her President and find out what she’d do, but personally I’d rather she confine her activism to talking. YMMV! 🙂

  7. jemand, just a guess, but I’d think some people getting those tests done might like to find out before hand so that they can prepare themselves, their homes, their families, etc. before the baby is born.

  8. well, maybe then that explains the 10% who don’t abort. I *do* think though that the sample would be highly skewed though.

  9. And, of course, many doctors will pressure all women above a certain age into having these tests done. It’s become standard practice, perpetuated by cultural assumptions and the medical profession. jermand’s statistical nitpicking seems to be missing the point, by and large.

  10. Amusing side note: An Irish bookie is taking bets on Palin’s Fox gig. Specifically, how long it will last, and which minority she will offend first. (Gays/lesbians/bis lead at 4-1, followed by Muslims and African-Americans, both at 6-1.)

  11. jemand, just a guess, but I’d think some people getting those tests done might like to find out before hand so that they can prepare themselves, their homes, their families, etc. before the baby is born.

    Yep. I don’t want children, but if I did, Down’s Syndrome wouldn’t deter me. I’d the tests because I’m a planner–I would want to know so that I could make the best arrangements and plans for my child and my family.

  12. I think Sarah Palin might end up — in the long run — being the “right” kind of advocate, but not in time for her Fox news gig. As Christina Chew and Bitter Scribe point out, being a young adult or an adult with some kind of developmental disability is hugely different than being an adorable kid with a developmental disability. The whole “blessing” thing could work for Palin for years. In the part of the South where my sister — an adult with a developmental disability — lives, all the Christian high schools send out their cheerleaders for “miracle league” baseball games for children with disabilities, which are covered by the media, etc. etc. Effective inclusion for adults with disabilities — especially developmental disabilities? Not so much. If things don’t change Palin will learn all about it, but in 25 years: long after her public gig (I’m betting) disappears.

  13. What is particularly unfortunate about the high abortion rate for fetuses marked as having Down Syndrome — and I say this as someone who is 100%, no questions asked, pro-choice — is that studies show it is one of the most rewarding kinds of disability to have in a family (sounds really odd, I know). What I mean by this: DS is really recognizable, so that outsiders react relatively well to it, as opposed to something like autism that isn’t “visibly” marked so that a kid or adult behaving strangely often elicits just hostility rather than “aww” or “there but for the grace of god” or whatever that prompts people to be nicer. Since DS is also really recognizable in utero, testing for it kind of gives everyone this false sense of “insurance” about not having to deal with difficult kids / people (as parents, and as a society). The truth is, there are a lot of flavors of challenge for which we should be making more rather than less room!

  14. Normally I would think that any actual parent of a child with a disability, dealing with the real-world issues that this entails, might not be a particularly good advocate for a woman’s right to decide for herself whether to terminate or continue, but ought to be a reasonably good advocate for other parents of children who have disabilities, who need the same kind of support and social acceptance as they themselves need.

    It says something about Sarah Palin that I’m pretty confident she’s going to regard any issues she has as her own special little snowflake issues, while other parents are wimps for complaining. She’s going to embezzle, borrow, or steal whatever resources she needs, without the slightest guilt because it’s what she deserves, and she’s not going to think that any other parent deserves the same resources. Also, I’m far from clear that she’s actually going to be an advocate for her own child: I see no particular sign of empathy or loyalty towards her other children.

  15. Just a small quibble: Kristina Chew spells her first name with a K, not a C.

    And I too wonder how many people would dread having a disabled baby if the structural and social supports were there for children with disabilities (including those transitioning to adulthood), particularly those whose families are of more modest means. I’m not holding my breath that Sarah Palin will ever cop to that stuff being a problem for anybody. Not even when her child gets older and requires a much more sophisticated level of care and education than he needs in infancy. Money isn’t a problem for her, and it’s pretty clear where she stands on people who haven’t attained her level of financial success.

  16. Kathleen, can you refrain from judgements about what kind of disability it’s more rewarding to have on this thread please? And visibility really depends on the perceiver; you’re basing “rewarding” on other people’s reactions? Why do disabilities have to be judged in terms of reward? For a given person’s family? And ‘relatively well’ doesn’t mean… well, so. I just… no.

    Folks, you will want to tread most carefully with this thread.

  17. Chally, effective social change really does require understanding what’s happening on the ground, and since this is something in which you have an interest, there are good reasons for you to take an interest in the research. Specifically, if you ask people to self-report how they feel about their overall experience being the sibling of a person with a developmental disability, siblings of people with DS report a happier experience. There are clear social reasons for that, chief among which is the higher profile of DS as a recognized kind of disability around which a fair amount of positive public information has been disseminated.

    If you want to understand disability, how people react to it, the consequences, and *where work needs to be done* in terms of societal attitudes, you need to take an interest in empirical studies, not concern-troll about how discussing them is simply not done.

  18. @Kathleen, I don’t think calling Cally a “concern troll” or implying she is ignorant of “the real situation” is a really nice reply. In fact, it’s kinda shitty. Way shittier than maying an honest faux pas. The appropriate response would be to say “sorry.”

  19. Kathleen, I am a staff member here and also disabled, not a concern troll. I did not deny the experiences of people who have disabled siblings and believe it or not I do have an interest in discussing disability. That was incredibly rude.

  20. History would suggest that Palin only espouses a cause when it personally affects her, so with that in mind, I only see her becoming a policy advocate for the disabled when Trigg is old enough to go to school/go out of school/is an adult.

    So, I don’t think we’ll see anything different from the “he’s a blessing” any time soon.

  21. Anyway, I don’t think Palin is a true disability advocate. Honestly, I think she’s cashing in on the stereotype of the grateful cripple that needs help. It honestly seemed like she was trying to make herself out to be better than other people becuase she was willing to take on the “burden” of a child with a disability.

    I have burden in quotes, because although there are challenges to parenting a child with a disability, a whole lot of those challenges are social and structural issues. If we actually valued people with disabilities, our services wouldn’t be the first on the line when the budget gets tight. (I’m looking at you my state of Maine)

    @Kathleen, honestly, are you new here? Chally, of all people, a concern troll? The things you are saying are offensive. Making a hierarchy of disabilities generally isn’t a wise thing to do.

  22. I have a sibling with a disability, my youngest sister has autism. I also work at an agency that is solely devoted to assisting those with developmental disabilities. In NY there are a lot of services and help for parents, but there is not a lot of information out there so it’s very hard to access without help. It would be great if there was a high profile person who was willing to help educate the public as well as parents, but somehow “teaching independent living skills to adults” or “helping teenagers access their community” doesn’t have the same ring as “don’t abort your baby!!!”. I can’t see Palin being that person though.
    It makes me mad. The agency I work at has so many services but because it’s a non-profit, we don’t really have money to advertise/educate. Even my job, in which I work with parents whose children have really challenging behaviors to help them by giving new ideas and someone to talk to, many parents don’t know it’s out there until someone mentions it. My sister receives services where a staff works with her on her safety skills and helping build healthy relationships three times a week, it gives her a fun experience while teaching her needed skills and it gives my mom a break from full time care giving. The only reason she has it is because I started working in that program and told my mom that I thought she could benefit from it.

  23. Maybe “rewarding” wasn’t the best word to use, but I think I understand what Kathleen is saying. Down’s Syndrome elicits sympathy because it’s a visible disability whose genetic cause has been understood for decades. Autism manifests itself entirely through behavior, and its causes are still unknown. The higher-functioning variants weren’t even recognized until about 10 or 15 years ago. That’s why an asshole like Denis Leary can get away with calling autistic children “brats,” while no one who pretends to be a decent person would dream of making disparaging comments about Down’s children.

  24. I think visibility is always important, especially in this country where we’re constantly trying to hide or erase those with disabilities from sight. My husband’s uncle has DS, and he’s constantly commenting about how much more visible people with DS are in Norway (which is where he’s from) than they are here, since Norway really makes a concerted effort to integrate all of its citizens into the fabric of society by providing services and opportunities (yes, through the government, horror of all horrors) that actually makes that integration, you know, feasible. I hardly see Sarah Palin as the next great advocate for setting aside *government money* in order to (gasp) help people.

    I also see Kathleen’s point, and I don’t think she was making value judgments on the disabilities themselves, but rather on which disabilities society supports with a certain degree of understanding (if not actual accommodation, which also isn’t really the right word). Recognizing such a structure/hierarchy isn’t the same thing as supporting it.

  25. Bitter Scribe and Andrea — thanks for seeing what I meant to express. Julie — my experience is very much like yours; my sister lived for a while in an apartment complex for adults with developmental disabilities. I just happened to read the newspaper on the right day and saw an article about it — finding out how to negotiate services and learn what’s out there is much more difficult than it should be.

  26. Social changes – particularly to do with funding and access – are the first step forward in addressing the idea that it is a calamity to have a disabled child (and indeed that it is a calamity for a woman to have any child at all at certain stages of her life). A “cute baby” is not the same as a needy adult – and I wonder if horrendous surgeries like the “Ashley treatment” are part of this, not just for the disabled person’s physical “manageability” but for social approval and support for the carers and disabled person themself.

  27. Andrea, I agree that visibility of disabled people in society is important. I also think it’s important, where the word is applied to ‘does that person look disabled or not,’ to interrogate the concept of visibility, you know? Visible to whom? It assumes an outside (privileged) and certainly sighted perspective! For example, autism isn’t necessarily as “invisible” as some might think in all contexts, nor deafness, etc. That’s what I was getting at.

    Okay, Kathleen, that wasn’t clear to me. I am still bothered by the centring of abled people here, and by your subsequent comment to me.

    ETA: And folks, I disagree that it’s possible to know how acceptable a particular disability is to the abled public in all circumstances and contexts.

  28. I see what you’re saying. Of course, there’s no “hierarchy” of disability, but mental retardation is often more palatable to the public than say, mental illness, as was the case with Rosemary Kennedy.

  29. Chally, totally, totally. By visibility, I don’t mean marking someone as “obviously having a disability that’s easy to see.” I meant visibility in the sense of awareness and recognition, and hopefully therefor acceptance and integration (is integration even the right word? I mean providing the resources so that those with disabilities still have access to society in general and don’t end up effectively sequestered by themselves without that access.) Arg, I’m not sure if that’s coming out right.

    But anyway, my point is that Palin might put DS on center stage for a few seconds, but she’ll do nothing for the structural changes needed to actually allocate resources and funds towards improving access. And she’s especially not going to promote that agenda on Fox News. As if.

  31. I think if we want to change society’s attitude and acceptance of people with disabilities, especially concerning DS, we (women, parents, family, friends, allies and people with disabilities) need to organize and seriously demand programs that are invested in the well-being of all citizens and the community. Programs Such as:

    1. Universal Health-care (on par with France)
    2 Universal Daycare system
    3 Paid maternity/paternity leave (by extension nannies)
    4 Access to free prenatal care (would be part of health care)
    5. Well funded educational systems

    With these programs, I think the physical and economic “martyrdom” or “burden” associated with caring for disabled children would be greatly decreased as well as the 90% abortion rate. When society is willing to invest in the health and well-being of its citizens (provide social safety nets), the social attitudes towards raising and/or being disabled will also change.

  32. Got it Chally, and I’ll be more aware next time. (In my defense, I’m an art historian, so I’m pretty much always thinking in terms of visuality!)

  34. I really like this post. I’ve had issues with friends who are anti-choice who, when this particular issue comes up, act like anyone who would even remotely consider aborting a fetus due to Down Syndrome or any other disability is a monster, even calling it eugenics. It may seem that way, sure, if you approach it in a vacuum. But what about a family that would have enough trouble taking care of an able-bodied child? And that’s not even going into the fact that the larger society makes it difficult enough to be any form of disabled even if one’s family is willing and able to go the extra mile to take care of them.

    I have trouble thinking of how I would fare if I found out my future kid had Down Syndrome or something similar. On the one hand, I know I would not be the best parent for a child with DS, for reasons I’d rather not discuss here. But giving the child up for adoption seems worse, since of course most parents looking to adopt children aren’t going to choose a kid with special needs over an able-bodied kid. Again, it would be much easier to make the decision to carry the child to term if our society made it easier for people with DS and other similar disabilities to flourish, but the fact is that it doesn’t.

    And that’s why I think Sarah Palin’s method of “advocacy” doesn’t actually do anything to further the cause of disability rights, but maybe hurts it. The more we hold up cute babies and kids with disabilities and talk about how they’re “gems” and “special blessings,” the harder we make it for them when they’re no longer at the age where they can be cute and taken care of – when they’re adults who are expected to just automatically “adjust” to the adult world. I speak somewhat from personal experience, as a person with mild Aspberger’s Syndrome. My awkwardness and obsession with “odd” subjects was “cute” when I was, say, six. I’m almost twenty now, and it’s not cute anymore. It’s just “weird,” and I’m expected to magically get over it – but I can’t.

  35. @Salome
    As a person with Aspergers myself i find that obsessions can work for and against you. My obsession with Soviet Russia has really helped me in my acedemic life, my obsession with collecting interesting carrier bags not so much so. I find that i have to hide the one obsession but the other is not only accepted but encouraged and “makes me an interesting person to spend time with”

    The main problem i find is that if people know about the Aspergers they tend to put the disability first and me second. I’m a person with aspergers not an aspergers case with person attached. Another Aspie i know has problems himself with that distinction and tends to use his disability as a get out clause, say when debating policy if he is losing will just go “I have aspergers” and expect people to just stop or be accused of ableism.

    I wonder if Palin will accuse all people who chose to abort a downs fetus as ableist?

  36. It’s not about a “caretaking structure” in my case. You can have a million top-notch facilities with highly trained personnel, and I still would have massive reservations about having a child that could be seriously disabled, physically or developmentally.

    Most people just can’t interact with the disabled well. They can’t reach the person, only the disability. And there’s nothing in the world that can retrain people into thinking that caretaking is an enjoyable task. Caretaking is a fucking horrible job. It is disgusting and messy and dirty. It demands 110% of you every day. You can’t be sick. You can’t mentally phone in your work performance. You’ve got to be at the top of your game each and every minute.

    Some people have the ability to just…push aside the had parts of caretaking, because they like interacting with people, or they just have a flair for communication with the disabled. And these people are rare and practically shit gold, in my eyes.

    You can have the best damn residential facility money can buy, but if you can’t find certain, specific personality types to work there, there is going to be abuse, and neglect, and the residents are going to be deeply unhappy people. And there’s just no two ways around that.

  38. I dunno karak, with enough money to pay caretakers a living wage and benefits and time off etc, I think more of them could afford to do what they like. But that’s speculation.

  39. I really like this post. I’ve had issues with friends who are anti-choice who, when this particular issue comes up, act like anyone who would even remotely consider aborting a fetus due to Down Syndrome or any other disability is a monster, even calling it eugenics. It may seem that way, sure, if you approach it in a vacuum.

    Many PWD consider selective abortion to be eugenics. I’m sorry if using that word offends non-disabled pro-choicers, but I think in some cases they ought to check their privilege and consider why many PWD hold these views. And yes, many of us do realize that choices aren’t made in a vacuum, there are structural reasons behind these choices, etc. Doesn’t necessarily mean that eugenics is not a suitable word, nor does it mean that we’re calling anyone a “monster.” I don’t think that pro-choicers should be as interested in engaging with non-disabled anti-choicers, many of whom express no interest in disability rights in any other context. I do, however, think that non-disabled pro-choicers need to be conversant with PWD who have criticized societal-wide tendencies towards selective abortion, and they need to do it without being hyper-defensive. Oppressed people do not need to couch their language to make it sound nice for people who do not share a particular oppression.

    I don’t even know where to start in terms of 38, but I will say briefly that the idea that it takes a Super Special Able-Bodied person to interact with “the disabled” is, quite simply, offensive and incorrect. Sheesh.

  40. This is a reproductive rights topic that deserves much more attention than it has been getting in recent history, meaning the last decade or two. Historically one of the main reasons for public and professional support for abortion law reform in the 1960s (and even to some extent in the 1950s) was to give women and their health care provides the ability to prevent “birth defects”, a term which in today’s culture might be difficult to use (and interestingly doesn’t seem to be used much) without seeming ableist (to progressives) or — what — “pro-abortion” to anti-choice folks. It’s worth though understanding this history in depth to understand how the issue is being framed today and how it affects pro-choice concerns.

    There was an increased awareness and incidence of birth defects in the ’60s related to drugs like thalidomide, diseases like rubella, and possible environmental dangers like might come from pollution or radiation, without (at that time) the ability like we have today to safely, reversibly control conception (besides abstinence), so that public opinion was swayed to support decriminalizing abortion as a means to help prevent birth defects. It was concern about birth defects along with concern (more towards the end of the 60s) over overpopulation that really drove public and professional opinion to decriminalize abortion and greatly expand funding of public health services that provided contraception to young and poor people, and not so much a more enlightened proto-feminist concern about women being able to make reproductive decisions for themselves.

    The anti-choice movement today uses imagery of fetuses and prenatal development to move public opinion against abortion, but many people aren’t aware that the same imagery – though not in 3-D motion pictures taken as can be today in sonograms – existed in the 1960s, both in beautiful, colorful, minutely detailed pictures of (healthy, normally developed) mid-term fetuses that were on the cover of magazines like Life and otherwise in the press, and in other articles also imagery at least in words, if not usually in pictures, of fetal abnormalities. So the trope that we hear from anti-choicers (and even from many who speak for the pro-choice movement) that sonograms have lead to some sort of tipping-point like event in people’s minds about the “humanity” of fetal development is false, because there was much the same imagery used back in the 1960s, and when it was used then it was to the pro-choice movement’s advantage.

    Public awareness of that imagery like that helped build support for abortion law reform and Roe v Wade (and the almost non-event that Roe was in the news media of the time) and making elective abortion more accessible for all women. If anti-choice support has been built in recent decades by imagery like sonograms of developing fetuses, it’s not because that imagery inherently biases people against abortion, it’s because the pro-choice movement hasn’t effectively used it to it’s advantage. The anti-choice movement today uses pictures of pretty, healthy, babies and children (including, yes, healthy, wanted babies and healthy, wanted children with developmental abnormalities), and imagery of those babies and children being raised by loving parents, and we’ve got pictures mostly of…individual women talking about their individual rights. It might be helpful to the pro-choice movement to think of ways to take back some of that imagery that we used so well decades ago.

    It’s important to understand this because even today if one takes away the argument that abortion should be easily (and nonjudgementally) accessible to women who choose to terminate a pregnancy for developmental or birth defect-related reasons, one takes away one of the key reasons for public and professional support of minimal restrictions on elective abortion. With the much safer, more effective contraception methods available today, especially super-effective, long-term methods like contraceptive implants the other argument that elective abortion needs to be unrestricted for population growth concerns simply isn’t there today as it was in the 1960s. Take away these historical reasons for decriminalizing abortion – birth defects and overpopulation – and public and professional opinion starts to waver and become divided on if and how to regulate access to abortion, especially for younger and poorer women.

    So let’s hope there’s more discussion about women (and their partners) considering and deciding for themselves if and how to test for developmental disabilities and be open to all of the choices that would be available to them should they choose to test, not only because there’s no easy answer for what they should do, but also because it’s one of the best ways for the public to appreciate the moral complexity of these issues and why restrictive anti-choice laws and policy don’t help with that awareness and appreciation.

  41. Southern Students, I think it depends on whether your ultimate goal is legalized abortion or women’s rights. For me, it’s the latter, and I want to defend choice *at the woman*, not at the fetus. Any other strategy gives away the larger goal.

    I also think — and this partially is addressed to Salome as well — that prenatal testing, defense of abortion as long as it’s the “virtuous” (eg, avoiding having a disabled child) kind is not just obviously able-ist but promotes a really worthless kind of magical thinking around disability. DS gets targeted because it is targetable, and it invites people to think of disability as something unfortunate that hits the unlucky but is largely avoidable by the suitably prudent. What we should be encouraging people to face squarely is the fact that human beings are all vulnerable and we all need one another’s care and help.

    thinking one couldn’t handle a “different” kid and can avoid the problem with pre-natal testing: it’s like wearing a rabbit’s foot during pregnancy. There are many kinds of different kids, most of which are not identifiable before birth and some of which take years to manifest their different-ness! Your kid might turn out to be one of them! Welcome to parenthood! Also, your kid — being a human being made of tender flesh — might become physically or cognitively disabled during his or her life. This might also happen to you. The idea that somehow pre-natal testing and selective abortion is a “get out of fragility, vulnerability, and dependence” free card is NOT one I think feminists — or anyone — should be promoting or using as a strategy.

  42. I believe the 90% number came from a study in the UK? It may not quite be the same here (although I’d expect it to be close).

    And honestly- I can’t say that I know what I’d do. If I got pregnant right now my partner and I could go either way with it- if we barely decided to carry the pregnancy to term, and then were given a diagnosis of DS that meant an enormous burden of care that our incomes/insurance plans might not cover, terminating the pregnancy might seem like the smarter alternative than to create a life for which we may not be able to adequately provide.

  43. The idea that somehow pre-natal testing and selective abortion is a “get out of fragility, vulnerability, and dependence” free card is NOT one I think feminists — or anyone — should be promoting or using as a strategy.

    Well, few feminists (and/or pro-choice activists) “promote” abortion for any particular reason, much less for “fragility, vulnerability, and dependence”.

    It’s hard to say as a feminist (or pro-choice advocate) that some people, some women included, are relatively more fragile, vulnerable, or dependent than others, but to the extent that those terms are appropriate, people like that maybe should (and probably do) especially take care to not get into situations that require more resilience and commitment than most people seem to have. Choosing to carry to term and raise a significantly disabled child is maybe more likely to require those character qualities from a parent than a non-disabled child would. This shouldn’t suggest a failing or weakness on the part of someone who thinks that applies to them, it can be strength to acknowledge and try to better accommodate one to one’s own limits as well as one’s abilities. It’s necessary, in fact, for parents to do that to avoid becoming overwhelmed with the responsibilities that come with raising even wholly “normal” children.

    So that’s not to say that raising a non-disabled child (or children) doesn’t require resilience and commitment, but it’s obvious to anyone who has played a caregiving role with a disabled or incapacitated person that it requires changes in one’s lifestyle and engagement with a community of support to be able to do that well and still function normally otherwise in one’s life, even if it’s simply to work outside the home in a regular 40-hour a week job, or to provide support to others whom one may have a prior commitment to, like previously born children and family members, for example.

    It’s easy to say that those communities and services (from special education and afterschool programs for children with disabilities to services for elderly and disabled adults) should be more supported the public in general, but some people just don’t want to personally be involved with those communities or services at all, and if so they’re probably not going to be willing or able to make the increased commitment that comes with caring for an especially disabled person, whether it’s a disabled child or an elderly parent, and they shouldn’t feel it’s some personal failing for not doing so.

    It’s probably best, if that’s their decision based on how they understand themselves, for them to avoid situations where they’re required to act with that commitment, and make choices that don’t require that…including, in the case of pregnancies involving disabilities, perhaps choosing prenatal testing and elective abortion, and even better – which most women like that consider – using contraception to reduce the chance of becoming pregnant in the first place and having to confront, perhaps repeatedly, those issues. We might also find that the more we support them in those choices, the more supportive they’d be of those communities of support and services which even the most resilient and committed require to care for people with disabilities.

  44. @Salome, Sarah. Of course it’s eugenics. It’s also eugenics when someone who tests themselves for Huntington’s decides to get sterilized. All the unconscious decisions that go into selecting a mate are also eugenics.

    All of these personal and private decisions share the word, but they are very different than the institutionalized “system” of eugenics that societies experimented in during the last century, with “experts” pontificating from on high the entire society’s eugenic decisions. Private decisions, though they may still be “eugenics” cannot create the harm that external impositions on someone’s life do.

  45. southern students — I think you are missing my point, which is that there is a very tiny sliver of circumstances in which “opting out” of dealing with disability is possible and the more attention is focused on those circumstances the more people think about disability as something one can get away from rather than something that engages us all. *any* person can become disabled. *any* child might have unforeseen difficulties — the ones that can be tested for are the tippity tip of the iceberg. so much social and political energy goes into focusing our attention in the wrong places: the tiny, talismanic ways we can avoid difficulty rather than the huge basic fact that all of us are vulnerable, fragile, and dependent and should organize ourselves around dealing with that fact rather than superstitiously warding off special instances of that universal truth.

  46. ss — if every “unsuitable” parent decided to abort children who tested positive for genetically or otherwise observable difference, there would still be thousands of “different” babies born to unprepared parents every year because most kinds of difference are invisible to prenatal tests. Let’s realize that difference and disability are part of the human condition and deal with that reality as a society, not somehow think we are solving something by prim lectures about individual preparedness.

  47. Kathleen wrote:

    my point … is that there is a very tiny sliver of circumstances in which “opting out” of dealing with disability is possible and the more attention is focused on those circumstances the more people think about disability as something one can get away from rather than something that engages us all.

    Of course people shouldn’t “opt out” of dealing with disability in society or in people they are closely related to and resort to some form of ableism, any more than they should “opt out” of dealing with any factor that might cause one to have special challenges in life, including race, sex, national origin, and the rest of that list.

    But there’s a difference between saying one should accept disabled people in one’s community and workplace, make special accommodations for them as needed to give them equal opportunities, and meet their general needs at least as much as society does for so-called able people, and saying that someone considering becoming a parent must carry a pregnancy to term regardless of the disabilities or developmental abnormalities that a fetus might have, or the difficulties say that a multiple pregnancy or birth might cause them, or regardless of the impact it might have to their families and the responsibilities they already have or intend to have in the future. It’s wrong to imply that prenatal testing and considering abortion depending on the results of those tests – and the woman and significant others she cares to involve weighing everything else along with those test results – it’s wrong to suggest that is necessarily immoral or that they should feel they are somehow inadequate for doing so.

    That’s not to say that you’re saying that, but that’s how some rhetoric along these lines goes. And if the rhetoric goes that way, most women who want abortions for reasons related to fetal abnormalities would probably still get them, but that sort of shaming would make it easier to enact other abortion restrictions that really have nothing to do with fetal abnormalities or disability rights, but rather just would make it more difficult for young and poor women to access abortion for elective reasons.

    But there are some things you wrote that one should have no difference with:

    …all of us are vulnerable, fragile, and dependent and should organize ourselves around dealing with that fact rather than superstitiously warding off special instances of that universal truth.

    Let’s realize that difference and disability are part of the human condition and deal with that reality as a society, not somehow think we are solving something by prim lectures about individual preparedness.

  48. Kathleen 1.13.2010 at 1:11 pm
    thinking one couldn’t handle a “different” kid and can avoid the problem with pre-natal testing: it’s like wearing a rabbit’s foot during pregnancy. There are many kinds of different kids, most of which are not identifiable before birth and some of which take years to manifest their different-ness! Your kid might turn out to be one of them! Welcome to parenthood!
    It’s bad logic, and a bad argument as a result.

    There are a huge number of risks.

    Some can be affected, giving an opportunity to change the risk. Some cannot. And still others carry an either/or effect: you can perform amnio or CVS, which allows you to reduce the risk of having a child with conditions you don’t want, but that raises the risk of miscarriage.

    Finally, some things aren’t even risks to some people. If you don’t care if your kid has DS or not, then it’s silly to talk about the “risk” of having a DS child. But that’s a deeply personal choice.

    It is perfectly rational to simultaneously accept the risks you can’t affect and also to try to minimize the ones you can affect–whatever those are. It is equally rational to make your own choices based on your own value structure and situations.

    Also, your kid — being a human being made of tender flesh — might become physically or cognitively disabled during his or her life. This might also happen to you.

    Sure! But what does that have to do with prenatal testing?

  49. @Sarah: I see where you’re coming from, and why you consider it to be “eugenics.” Personally, I think the term is a very loaded one, but perhaps it does apply.

    I wanted to clarify: I wasn’t saying that anyone who finds abortion-based-on-disability problematic is automatically equating those parents who make that decision to “monsters.” I was just talking about a very specific type of anti-choicer who brings up this issue as though it’s their abortion-argument trump card, taking the “eugenics” argument to its very extreme and acting like anyone who would abort their future child on the basis of any sort of genetic abnormality (not just DS, even the can’t-survive-for-more-than-an-hour-outside-the-womb situations) is no better than Joseph Mengele. There’s a big difference between your argument and the argument able-bodied anti-choicers make on this topic (and you’re right that they’re probably not worth talking to anyway, but sometimes it’s unavoidable for me).

    What bothers me in particular about their arguments is they’re every bit as ableist as anyone else. The way they talk about disabled children as though they’re “special gems” is often quite demeaning, and I’ve never seen one extend their “advocacy” to adults with disabilities. They coo over children with DS but they get uncomfortable and disdainful when they see an adult with DS. They’ll use disabled people to push their pet issue of illegalizing abortion, but they have no interest in the larger issue of disabled rights since it doesn’t affect them.

  50. SS & Salome — I’m 100%, no questions asked, pro-choice. But I think using avoiding having a disabled child as an argument *for abortion rights* is horrible. I think it’s horrible in itself, I think it promotes a really nonsensical attitude toward the risk of encountering disability in one’s own life or the life of a loved one (real risk: pretty much 100%, no matter what you do), and I think it gets women’s rights — which are in my view the proper grounds of support for abortion — mixed up in confused, wrong-headed, basically sickening debates about people’s anxiety about disability . I’m not “shaming” anybody. It’s zero percent my business who has an abortion or why. But I am not going to sit by quietly when feminists trot out deeply silly disability anxieties as if they have anything sensible to do with abortion. If, in fact, we accept disability for what it is — an intrinsic part of human existence — the result will be an expansion of the real choices available to pregnant women (& to everybody else, too).

    Finally — just strategically — it’s exactly these arguments that mean Sarah Palin “wins” the debate by having a baby with Down Syndrome. She gets to say, I’m not a horrible disability-hater like feminists! Using disability as a bogey-man to scare people into supporting abortion rights is a loser on two fronts: it doesn’t persuade anyone that women have rights to their own bodies, and it doesn’t persuade anyone that able-ism is wrong. Feminists should cut it out. Then we could say what we should say to Sarah Palin: congratulations on your beautiful kid. We support your choice about becoming a parent the same way we support all women’s choices about becoming parents. We also welcome the contributions you are sure to make to improving policy around disability, which is — also — a feminist issue.

    See how that groovy jujitsu works?

  51. Kathleen 1.14.2010 at 12:00 am

    SS & Salome — I’m 100%, no questions asked, pro-choice. But I think using avoiding having a disabled child as an argument *for abortion rights* is horrible

    But that doesn’t make sense unless you are trying to shame

    Look, I’m for 100% choice irrespective of reasons. So if someone doesn’t want to have a kid at all, I think they should be able to abort without fuss. And if someone doesn’t want to have a kid with DS, or a kid with red hair, or a boy, or a girl, or twins, I think they should be able to abort without fuss.

    Trying to make distinctions between those various reasons for abortion–by, say, being ‘concerned’ about one reason for abortion but not about others; or by, say, calling some of those reasons “horrible”–and trying to promote those distinctions, is not being 100% pro-choice. You can say you’re supportive of decisinos until doomsday, but when you say it in the same post as you cal thoe decisions horrible, it doesn’t grok.

  52. Speaking as someone who spent over a decade working in various group homes for developmentally disabled adults, I find Palin’s “advocacy” disturbing because she’s promoting some rather damaging stereotypes about people with DS.

    In particular, people with DS are almost always portrayed as always being “cute”, innocent, friendly, child-like and happy.

    But in my experience, people with DS have the full range of potential personalities as any other person.

    And having to live with the stereotype of being always happy and friendly, cute and childlike, can be difficult. Especially for a shy adult who is having a bad day. Being stereotyped as “innocent” makes life pretty hard for someone who is interested in sex, or swears, or smokes, or drinks, or does many of the other things that adults do in our society.

    Palin’s “look! cute!” is a lie that undermines the humanity of people with DS, creating an image of a doll with various desirable features, rather than a human being.

  53. I would argue that aborting fetuses based on disability is only eugenics to the extent that the government encourages it. A woman deciding that there is no way she can take care of herself and a baby with a disability and therefore getting an abortion? Not eugenics. Our government deciding to crap all over PWD and make it crazy-difficult for them to get along in society, or programs encouraging fetuses to be aborted? Much more eugenics-like.

  54. Also, I trust Palin to “advocate” for PWD/their families about as much as she has managed to “advocate” for women. So yeah.

  55. I’ve got a sister with Down’s. She’s 25. I love her dearly, but also know that I don’t have the strength to have a child with Down’s. Advances in medical care mean that my sister will have a nearly-normal lifespan. However she will never be able to be an independent adult. She will always need supervision and intensive care from a responsible adult. The harsh reality is that it is emotionally, physically and financially very difficult to manage day-to-day care. This is difficult for a “normal” child, but even more so for one whose need for care doesn’t end when she turns 18. We’re happy that each of us siblings is willing and able to contribute to her care. But not every family has such a safety net.

    Quite frankly I’m glad the amniocentesis is available for me so that I can make the choice. I know that I could not handle a Down’s child. And I’m glad the 10% of families who choose not to abort have the fortitude to raise “God’s Special Children.” They are stronger people than I am.

  56. Bagelsan: It’s also eugenics when the medical system systematically encourages and/or enforces abortion for fetuses destined to have disabilities, and sterilisation, birth control, and abortion for disabled people.

    When your doctor routinely orders prenatal testing without offering and discussing your wishes, and reaches for the abortion scheduling form while giving you the results? Eugenics. Even though it has little or nothing to do with the government.

  57. Re: “*any* person can become disabled. *any* child might have unforeseen difficulties” and abortion of fetuses with DS as “the tiny, talismanic ways we can avoid difficulty”) – I agree that prenatal screening may give a false sense of security because children can be born with any multitude of difficulties that cannot be detected via prenatal screening, and any able-bodied person can suddenly become disabled. However, prenatal screening is just one of many ways that people attempt to promote health and avoid disability – before pregnancy women are advised to take folic acid to reduce the risk of neural tube defects (e.g. spina bifida); during pregnancy many avoid alcohol, caffeine, un-pasturized cheese, etc, and some opt for (in some cases its strongly recommended/forced – my experience was that is was entirely my choice to test or not) prenatal screening to detect DS, neural tube defects and trisomy 18. After birth, we’re advised to breastfeed to reduce risks of a multitude of health issues, we are required to use car-seats, etc. From childhood to adulthood we wear seatbelts and helmets to reduce the risk of head and spinal cord injuries… In theory, all of these things are supposed to promote health and reduce “difficulties”. Are all of these things talismanic and do they all work against disability rights advocacy? Are all of these things eugenics? Are these things “bad”?

  58. PS – I do see how selective termination is more obviously eugenics, but wonder where the line between eugenics, and minimizing disability/maximizing health/ability is. I do apologize for the tangent, as well! Just trying to learn more and understand…

  59. I am uncertain how much of the decision to terminate is based on the environment and how much is based on the disability itself. Despite our ability to detect Down’s, we still can’t tell how severe it will be– it’s still a gamble to go ahead. On the one hand, your child may be as developmentally advanced, talented, and successful as Chris Burke. On the other, they may have a very severe form that requires them to live with family or be institutionalized. While increased public acceptance will make the lives of individuals with milder forms so much better that one could hardly think it a reason to abort, for the more severe cases…

    As wonderful and sweet as he is, the brother of a friend of mine has very severe Downs. He also had the best possible start to life– a loving and supportive family with the wealth to give him the best start, a fabulous school designed for the severely mentally disabled, a wide and caring circle of friends both with similar disabilities and without, and a supportive town that has made sure he has employment he enjoys and finds fulfilling with individuals who can communicate in sign language (he is nonverbal). I cannot imagine a better scenario for a child with a disability such as his. And yet, he cannot live alone– despite his fabulous therapy and education, and progress beyond what was ever expected, he does not have the judgment to manage his own living space without putting himself in danger. He also cannot drive or use public transportation on his own; he requires an aide at all times, even when interacting with people who are fluent in sign language, because he often needs reminders of basic things. He also struggles because his emotional level is not the same as his intellectual level, and he wants relationships yet cannot understand them enough to have a loving, egalitarian relationship. He is of course a wonderful sweet man and makes his family very happy, but I know most people will look at him– who has all the best in life– and not want to have children who have to go through that. The emotional strain of watching what their son went through has been very hard on his parents, despite their comparatively easy time raising him (that is, while he had challenges, they had an enormous amount of help).

    It is a tricky balance, and of course disability services are vital regardless of their overall effect. But I doubt that they will solve the problem or reduce the number of selective abortions, at least for Downs.

  60. @Kathleen: I think you misread my comments. I was not trying to say that aborting a fetus based on its disability is necessarily a “good” thing, nor is it a good argument in favor of abortion rights. (Personally, I think there are a lot better arguments one could make in favor of a woman’s right to choose – though that’s not the specific issue we’re discussing here).

    My point was more that you can’t approach this issue in a vacuum. It’s easy to dismiss anybody who aborts a child on the basis that it has DS as a monster, but that’s ignoring all the other factors that could be in play. Like income level – not every family can afford the extra medical bills and accommodations that come with having a child with a disability. Or the fact that DS often comes alongside other, more problematic genetic abnormalities – some of which may make survival outside the womb unlikely.

    And as commenters above said, if you’re not on board with the idea that women don’t need a “good reason” to abort their fetus, you can’t really call yourself “100% pro-choice.”

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