Why some people don't think Down Syndrome is bad

By Razib Khan | July 13, 2012 7:16 pm

I often criticize Lefty readers for their lack of reality-basis. Specifically, they often want to align reality with their own normative preferences, even though normative preferences aren’t necessarily contingent upon reality (e.g., sex differences). My post on Down Syndrome has elicited similar responses, but from people one might term social conservatives. So, for example, Ursula and Matthew Hennessey have taken to denouncing me on Twitter, albeit for statements that they no doubt find extremely objectionable. Not too surprising. But I found this post, A gift named Magdalena, particularly instructive:

But we aren’t victims. In fact, we’re the opposite. We are supremely lucky. Magdalena isn’t sick. Down syndrome is not a disease; it’s merely a collection of traits, all of which occur, though not all at once, in so-called “normal” people.

But how could Down syndrome be a gift? Surely that’s taking it too far. How could a lifetime of likely dependency be a gift? How could impaired cognitive development be a gift? How could gastroesophageal reflux disease and its expensive, twice daily medicine be a gift? How could two full years of potty training with no end in sight be a gift?

The truth is that there is no objective bright line between trait and disease. In fact, nature does not know trait or disease, it only knows phenotypes. Being white skinned in a pre-modern world is a disease at the equator, and being black skinned in Scandinavia would also have been a disease. In theory you could argue that Down Syndrome is not a disease either. The Hennessey’s are correct that the collection of traits of DS individuals can be found elsewhere. So imagine that a chemical exposure or some such thing functionally transformed a child with a normal karyotype into one with Down Syndrome. How would most people feel about this? Would parents view it as a gift?

Unlike some people who support abortion rights I don’t think that being pro-life is a malevolent anti-woman position. I think it is a sincerely held normative stance which has a basis in some straightforward logic. If you are pro-life, and you think abortion is the killing of a person, you don’t need to outline to me how valuable a human life is. That is something we begin with a priori. As it is, the reaction of some social conservatives to the reality of the abortion of individuals with congenital defects seems to me to resemble the caricature of Leibniz’s solution to theodicy. Instead of plainly stating why it is wrong, they seem to want to abolish the reasons which people give for having an abortion as reasons at all. The reasons may be valid even if the action is not right.

In any case, the Hennessey’s response is not that unusual in the specifics. Many people have had to take care of family members who are ill or infirm. They often state that these experiences build their character, and there is no doubt that their actions are the right, proper, and moral thing to do. But that does not entail that illness and infirmity are not things to be avoided if that possibility was available!

More broadly my point is that as a society we don’t have a good way to talk about human difference. We accept moral equality, but then implicitly go beyond that to destroy the distinctions between us, horizontal (e.g., male vs. female) and vertical (e.g., intelligent vs. not intelligent). The paradox is that in our choices we continue to acknowledge the power of difference, likely because our cognitive intuitions are keen toward detecting and sifting across differences.

CATEGORIZED UNDER: Health
MORE ABOUT: Down Syndrome, Theodicy
  • marcyd

    Both parties are right – of course downs in itself is nothing to be celebrated. but that’s so obviously not what your previous commentator was saying – his comments relate to his daughter as an individual, a human being. Something distinct to all those accurate symptomatic descriptions. Both views are true simultaneously – can scientists handle that plurality? I think perhaps this is a non debate, don’t you?

  • Luciano

    Camon, Razib. Take a break, man.

  • S.J. Esposito

    I wasn’t going to comment on this whole thing, but it strikes me as particularly disturbing that so many people are having trouble digesting the statements made on this blog. I find it equally disturbing that some people are seemingly okay with the fact that a disease–condition, cluster or traits, whatever you want–defines who their loved one is as a person in total. I wonder how said loved one would feel about this…

    My mother has been diagnosed with MS for 17 years. I know what it’s like to care for someone who is plagued with a disease. Her afflictions have become so prominent in her life and mine that it sometimes can seem to be her defining feature and the defining feature of our family life. However, this is not really the case–my mother is more than her constant pain, strange gait, etc.. And I can tell you this much: if there was cure for her disease tomorrow, she’d be first in line and she’d live a much better life for it.

    Afflictions such as DS may be qualitatively different in the way they affect people, but the main point is the same and Razib has stated that point factually, over and over again.

  • Tomasz R.

    To S.J. Esposito:
    I’m interested if people diagnosed with degenerative dieseases such dieseases as MS try alternative treatments, research information or just follow doctors advice.

  • Politicaljules

    Having a child with Down syndrome is a club no one realized how much they wanted to be a part of until they were there.

    You cannot possibly understand. You’ve never been there, but I think there might come a day when you do.

    It takes maturity.

  • Sandgroper

    The thing that I find troubling is that people closely related to DS people seem to think that saying “DS is bad” as a condition equates somehow to someone saying that their DS close relatives should not have the right to exist, or that they are somehow not worthy people, when it has been made abundantly clear that is specifically not what has been said, and the distinction has been made clear.

    More broadly I have been kind of interested in the politics of disability in Australia and the various accusations of being “ableist” – like, if someone is working to try to eliminate some form of disability in future generations of people, that is being “ableist” and discriminatory.

    The slightly surprising (to me) data point is that 10% of all people in Australia are classified as “disabled” for real purposes, such as assistance, government disability pensions, etc. The range of disability is of course great and very heterogenous, and includes conditions like asthma. Off-hand, I don’t know if it includes allergies; I don’t think so – if it did, the number would be higher than 10%, given the ability of the native flora to get up people’s noses. Of course, it would be pretty ridiculous of me to suggest that DS and allergies are comparable – for the avoidance of doubt, I am not suggesting any such thing – or that DS and asthma are comparable, but they are lumped together as ‘disabled’.

    The way the politics play out of course is that it is in the interests of the disabled lobby to have as many people among their ranks as possible to gain political clout, but that becomes disadvantageous when it comes to sharing out the available resources and services. So then it becomes…I think you can see where that goes.

    There is one notable disabled journalist on the Australian Broadcasting Commission which broadcasts nationally who also does country-wide speaking tours, etc who repeatedly uses examples of the way that disabled people are variously treated/dealt with that have actually not been true now for many decades. No one seems to be willing to call her out as a liar within the country, although externally the highly indignant response to any such allegation is “Australia is far more advanced than that!” My sister has a disabled son, and she nearly ties herself in knots with this stuff, simultaneously supporting and denying it.

  • S.J. Esposito

    Tomazs R.(4), does this question have any relevance to the thread?

  • AllenM

    Hmmmm, how about a thought experiment to clarify and reveal people’s preferences:

    Your child is be born with Down’s and has the classic extra chromosome. We can now engineer a new egg without the extra chromosome so the new child will be born as the “standard” version of the child with Down’s. Would you implant the new egg for gestation and raise the “standard” child alongside the older Down’s sibling?

    Lest anyone think this is idle speculation, remember human cloning is theoretically possible today.

    Our reality will soon include more options than many in the mainstream even deem possible.

  • http://www.nancybuttons.com Nancy Lebovitz

    Your list isn’t exhaustive– Terry Wahls is a doctor with MS, did her own research, and used a moderately alternative approach (a somewhat extreme diet and TENS) to reverse her symptoms.

  • Kris

    If Down syndrome is a gift, should we be researching ways to give extra chromosomes to future generations?

  • Karl Zimmerman

    I think it’s rather simple why people who are parents of children with Downs Syndrome keep responding the way they do. The default (probably through biology, in terms of mothers, although partially cultural, in terms of fathers) is to nearly-unconditionally love your children with a deep passion. Children with DS, whatever else is wrong with their cognition and bodies, have the normal human responses in terms of both self-awareness and awareness that other people are thinking/feeling beings themselves. Thus, they are capable of loving their parents back.

    I would predict, for these reasons, that parents of children with much more profound mental disabilities – along with parents of children with autism – would feel far more equivocal about their child’s status – and deep down inside, their child him or herself. They might be devoted to their care, but more frequently frustrated, angry, and distant, as they get no emotional reward back. And indeed, even among devoted parents of autistic children, few seem willing to accept their child as they are – instead desperately questing for some answer as to “what did this to them?”

    Essentially, reciprocal love conquers in terms of the parent-child bond, even if in the wider world, the shortcomings of the child are self-evident. But we don’t ask for cognitive equality as a condition of love anyway – how else could we love our own pets?

  • Ed

    Being egalitarian, liberal etc. often gets unfairly thrown in with ‘left’ in the political spectrum (because typically in the US it is the ‘left’ that are also liberal). It is however, possible to be a right-aligned liberal(focused on individual rights, freedoms, equal opportunity, egalitarianism etc.) for example.

    http://upload.wikimedia.org/wikipedia/commons/thumb/9/9c/Political_chart.svg/543px-Political_chart.svg.png

    It is also possible to NOT have an egalitarian bone in your body, but realize that markets (even if only strategic or key segments of it) need to be controlled and/or regulated for national good. This is also usually defined as ‘left’.

  • http://thinkinclusive.us Tim Villegas

    I wonder if Mr. Kahn would ask those people with DS if they think it is “bad” and what their response would be. Here is a link to a video of 35 people with developmental disabilities who were asked what they would change about themselves. It is interesting to hear what is said and what is not said.
    http://www.thinkinclusive.us/one-question/

    Tim Villegas

  • Peter Ellis

    The central problem with this conversation (it appears to me) is that Razib appears to be trying to start a discussion about the merits of genetic selection in isolation, divorced from the means by which such selection is exercised. That is a futile tack to take, because it considers only the possible advantages of selection without the accompanying drawbacks.

    If, for example, one could take a magic pill which ensured that you only generated ova / sperm with a normal karyotype, with no side effects whatsoever, I think pretty much everyone would want to take it[1]. But no such pill exists, and so it’s a meaningless hypothetical. Until and unless pre-conception methods of selection are developed, then the selection debate is inextricably entangled with the abortion debate – what degree of disability / difference justifies killing the product of a fertilisation event [2], and at what developmental stage might it be justified?

    Unless you address both the end and the means, then all you’re left with is handwaving and a general sentiment of “wouldn’t it be nice if we could ensure children are born with a good suite of heritable traits”. That plus 50p will get you a pretty lousy cup of vending machine tea.

    [1] Assuming they genuinely understood the consequences, lack of drawbacks, etc.

    [2] Deliberately phrasing this here to avoid taking a stand on when a zygote/embryo/fetus attains “personhood”, as that’s part of the whole debate and people will have differing opinions

    {Edit to add: For the avoidance of doubt, I do believe that there are conditions where abortion may be justified (feel free to think up your own examples, but for me it doesn’t include Down syndrome), and others where it is not (likewise). I’m pretty sure that’s not the debate Razib wants to have: but my point is that given the current state of the art, it’s the only possible debate.}

  • https://plus.google.com/109962494182694679780/posts Razib Khan

    The central problem with this conversation (it appears to me) is that Razib appears to be trying to start a discussion about the merits of genetic selection in isolation, divorced from the means by which such selection is exercised

    no, i’m trying to make a point about human inequality and difference. i’ve stated this several times. DS is an extreme case. if you can’t acknowledge that DS is “bad”, the game is lost.

  • AMac

    Karl Zimmerman, your compassionate perspective in #11 adds insight to the discussion.

    A thought experiment alluded to a number if times on this and prior threads remains — If you had the ability to confer the Downs Syndrome (cochlear deafness, etc.) phenotype on a wild-type loved one (real or potential), would you do so? Heck, would you choose to confer it on yourself?

    My answer: No. No.

    Is anybody answering “Yes”? It there some way that “Yes” is ethical or practical?

    For reasons given in #11, some people are terribly uneasy with the bluntness of No, and argue against Razib’s clearly stated position. Without offering a logical and clearly stated alternative.

    I ‘d prefer people to strive to say what they mean and discuss the implications, but I see that may not be a reasonable expectation.

  • Peter Ellis

    @15: That’s not how your previous post came across.

    If your entire point was to say “Down syndrome is genetically mediated and has adverse consequences”, you took a lot of words to say it!

    Instead, you open up in your first paragraph talking about how 90% of couples with a positive screening test choose to abort, then talk about reducing disease (how do you reduce a genetic disease except by selecting against it, whether pre- or post-conception?), and close by saying “our values will guide our actions” (again, what actions could possibly be relevant other than selection?)

    I do not accept your facile cariacature that “Lefty” people are arguing that {insert genetic condition X} is a good thing. Rather, whether explicitly stated or not, they are carrying out the cost-benefit analysis of the benefit from reducing cases of X and the harm caused by the means of reducing X. And so we have mutual incomprehension.

  • http://sjespositoweblog.blogspot.com S.J. Esposito

    “If your entire point was to say “Down syndrome is genetically mediated and has adverse consequences”, you took a lot of words to say it!”

    17, you’re still not getting it! Look up, literally about 8 inches, and you’ll see that Razib stated outright–and emboldened!–his main point!

    This is absurd… Why are people not getting this?

  • https://plus.google.com/109962494182694679780/posts Razib Khan

    I do not accept your facile cariacature that “Lefty” people are arguing that {insert genetic condition X} is a good thing

    hey asshole, i didn’t say that. don’t call me facile if you don’t understand what i’m saying (the inference is made because of the misunderstanding alluded to by previous commenter). your time for interpretation is over. go back to the bench and stop reading me.

  • Sandgroper

    Screw whatever they say on other blogs, I love this stuff.

  • Brad

    Razib – You asked several questions worthy of considering:

    1) How could a lifetime of likely dependency be a gift?
    2) How could impaired cognitive development be a gift?
    3) How could gastroesophageal reflux disease and its expensive, twice daily medicine be a gift?
    4) How could two full years of potty training with no end in sight be a gift?

    1) That is all of us realize it or not. No man is an island. Those that think they are are least happy.

    2) Impaired is a relative term. You are less intelligent than another human. Is your life a gift or a burden due to this relative deficit?

    3) What percent of the Ds population are you referring to? Granted I have GERD, but I don’t really see how that makes my life less worthy or valuable. Perhaps I am missing something.

    4) Most parents go thru potty training. While it may not always be pleasant, teaching your children things is often work. And with the work comes the reward of success. I don’t see how this is any different.

    These arguments as supports for your thesis of DS being “bad” are weak and poorly thought out.

  • https://plus.google.com/109962494182694679780/posts Razib Khan

    #21, look, the main issue is that you can make a case that DS isn’t “bad,” because being “bad” is a normative thing. from a genetic perspective there’s no comparison between normal variation and karyotype abnormalities. the two are qualitatively different. but, i’m not going to accept your definition, period, and i’m going to try and convince other people to reject it. i think rejecting the proposition that DS is “bad” is symptomatic of the tendency toward rejection of the idea of difference, and the values that differences may result in. comparing gastrointestinal disease to DS is farcical on the face of it to me, but i isn’t to you or those who agree with you (i.e., this sort of analogy has cropped up repeatedly). a major problem with our society’s inability to cope with difference is that it seems we’ve lost a sense of degree of difference.

    finally, you say: I don’t really see how that makes my life less worthy or valuable. i didn’t anywhere say that a person with DS’s life is less worth or valuble. i said that down syndrome is bad. i did not say that people with down syndrome are bad (on the contrary, those who have good impulse control tend to be notably nice people). many readers immediately saw the distinction, but some of you refuse to see it, or claim that it can’t be made, or don’t see it.

    it’s hard to have a serious discussion when your interlocutors insist on mischaracterizing your own position. i don’t react well to this. that’s why i banned peter ellis. he refused to believe i was saying what i was saying, and kept imputing his own interpretation of what i was saying. instead you just plainly interjected a model of what i was saying when i explicitly rejected that model several times.

    i’ll be talking about this issue in the future, in part because it comes up in my everyday conversation too. people simply have a hard time saying anything is “bad,” because that means people who may have some of that thing are “bad.” but at his point i’m not interested in pursuing this conversation any longer, because too often i’m having to reiterate that i didn’t say anything was imputed to me.

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Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

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