I think Down Syndrome is bad

By Razib Khan | July 12, 2012 11:04 pm

An interesting comment:

“If you add copies of a gene the result is not always good because of dosage effects (Down Syndrome is an extreme case of this on the smallest chromosome).” [From my post, -Razib]

As a father of a child with Down syndrome, I would take exception to this comment. First DS, is not “bad” – my daughter is an amazing and wonderful person, and her DS is part of that wonderful person. She is one of the most amazingly positive things that has ever happened in my life. So I have a hard time reconciling that with your “extremely bad” synopsis.

Second, DS is not an at all extreme case – it is rather run of the mill. It is so minor of a variant that it is survivable and very common place (1 in 733 births). People with DS lead full, productive and meaningful lives. That is not extreme, it is mild. Extreme would be being born inside out or having no chance of surviving 72 hours.
Please don’t add to the misconceptions around Down syndrome. Most of us parents, siblings, and self-advocates find this to be both untrue and unhelpful.


I feel to some extent that the commenter is engaging in a few rhetorical tricks (e.g., contrasting Down Syndrome with diseases which result in mortality within a few days of birth). But his point is well taken. I think it is useful because it smokes out some presuppositions about the nature of the world and the values we hold. The sketchy statistic is that 90% of couples who receive a positive result for Down Syndrome opt to kill their fetus (the shift toward older mothers though means that the number of children growing up with Down Syndrome is not declining nearly as much as you’d think). But in the media you see many more pieces such as George F. Will’s: Jon Will’s gift (for the record, Will is an agnostic). There seems here a disjunction between how people act, and what people say. Or, perhaps more accurately what people don’t say. 

One tack would be address Brad, the commenter, head on. I might point out that Down Syndrome can be bad, even if his daughter is a joyful and happy person who brings nothing but good into his life. But I don’t want to argue on the details of one specific case here. I suspect most readers will accept that I don’t think that just because I believe Down Syndrome is a disease I mean to imply that the lives of people with the disease are totally bereft of happiness, or that they are without value. That’s a caricature which only leads to fruitless and symbolic discussion, which plays out mostly for public consumption, and is not getting to the heart of the issue.

And the heart of the issue is that I believe that humans flourish best when they are beautiful, intelligent, and healthy. Some people deny that beauty and intelligence are anything but social constructs. But I bet a survey of progressive and enlightened women who might accept such propositions at face value, but who are in need of sperm donors, would indicate that no matter what people say for their peers to align with social norms they believe that beauty and intelligence are heritable, and their preference would reveal that they value these traits (individuals looking for sperm donors tend to value intelligence, height, and athleticism in the potential biological fathers). As far as health, as Brad’s comment suggests that’s a somewhat subjective proposition. Many of us have allergies. Are we diseased? I’m a very happy person who brings great joy to some people, but I do have this common autoimmune disease. Additionally, I’d also be happy to get rid of it. To address Brad more specifically: his daughter’s Down Syndrome is not a necessary condition for her being a wonderful and amazing person. I wish she did not have Down Syndrome.

All of this naturally opens us up to the “slippery slope” rebuttal. I think that’s a useless argument and I’m going to ban you if you bring it up. I don’t want to create a clone race. Being tolerant of a reasonable range of genetic and phenotypic diversity does not mean that one should be equanimous to the birth of people with karytotype abnormalities. I’m sure at some point someone will use the term “karyotype diversity” in more than a technical sense. It’s keeping with the spirit of the age, but it’s a farce. Diversity is not strength when that diversity is diversity of disease. Heart disease, congenital defects, disfigurements, obesity, and mental retardation are not strengths. They are all tragedies of various degrees.

The point of this post was to forthrightly admit and assert what I think are values which most of the human race holds implicitly. These values to some extent have been silenced because of the unfortunate fact that the Nazi regime took these intuitions and warped them to perverse and inhumane purposes. But I do not think that the world we have today is the “best of all worlds”, I think we can do better, as individuals, and as a society. It is doubtful we can abolish disease, but we can make a dent it in. It is doubtful that we can all be as svelte and fit as we wish, but we can aim toward such a goal. Unfortunately we do not cultivate our minds to the extent we would like, but we can agree that it is a goal worth pursuing and elevating.

In sum, humans differ, and that difference is not always a strength. The tall, handsome, and intelligent, have traits which most people feel to be superior. There is inequality. We can not abolish inequality, but we can increase the basal level of human quality of life. This may seem like an abstract digression, but it is not. In the near future we will have a much better sense of our mutations, and those of our potential offspring. Our values will guide our actions. Let’s have a frank and honest discussion about them.

Image credit: Tolgrenn

CATEGORIZED UNDER: Bioethics
MORE ABOUT: Down Syndrome
  • http://bloodyshovel.wordpress.com spandrell

    Amazing, wonderful, productive, full?
    Talk about overcompensation. He wouldn’t talk like that about himself. Or about a healthy child who was actually productive. He would feel inmodest.

    Hey, next thing you know Indians will talk about how their cretinism afflicted children are all amazing wonderful awesome superduper happy childs who do anything but give joy to their parents because they laugh all day long.

  • AMac

    This celebration of Down Syndrome (cf. celebration of the personhood of a loved one, notwithstanding their Down Syndrome) brings to mind the controversy over cochlear implants.

    Wikipedia:

    Much of the strongest objection to cochlear implants has come from the deaf community, which consists largely of pre-lingually deaf people whose first language is a signed language. For some in the Deaf community, cochlear implants are an affront to their culture, which as they view it, is a minority threatened by the hearing majority…. [To be most effective, cochlear implants are] implanted at a young age, during the critical period in which the brain is still learning to interpret sound. Hence they are implanted before the recipients can decide for themselves, on the assumption that deafness is a disability. Deaf culture critics argue that the cochlear implant and the subsequent therapy often become the focus of the child’s identity at the expense of a possible future deaf identity and ease of communication in sign language, and claim that measuring the child’s success only by their mastery of hearing and speech will lead to a poor self-image as “disabled” (because the implants do not produce normal hearing) rather than having the healthy self-concept of a proudly deaf person.

  • Jim Johnson

    Good post, Razib. I agree. (I think most would.)

    AMac – I had a girlfriend raised by deaf parents, and she introduced me to that concept – that deaf people thought cochlear implants were preventing new members from entering their culture. I had to think about it a bit before I knew how to reply, “Don’t you think the parents of these children would prefer their kids be a part of their own culture?”

  • Karl Zimmerman

    To be perfectly honest, despite being considered a deformity, I always wished I had six fingers and/or toes as a child. I’m sure I would be teased even more than I was already, but would have enjoyed standing out enough I would have found it worthwhile.

    Regardless, I generally agree with most of your statements (I’d quibble with “tall,” but you said it was perceived as superior, and it is, for men at least). Where the issue of “diversity” becomes difficult is cases like (mild) aspergers, or clinical depression, both of which can be bad to awful for the individual, but tend to be somewhat correlated with analytical and creative talents respectively. The world would surely be a somewhat poorer place in some respects if everyone with both syndromes was neurotypical, even though the individuals would be happier and more well-adjusted.

    I should note despite your avowed conservative philosophy, the thrust of the second-to-last paragraph is essentially progressive in nature. Believing that the human race, both as individuals and as a whole, can improve (not just technologically, but socially) is a hallmark of enlightenment liberal thought. Even the most honest conservative philosophers had a more dim view of the ability of man to reshape itself using reason (and genetic engineering is an extension of reason). Indeed, it’s no wonder that as heredity was first widely (if imperfectly) understood, it was progressives who embraced the implications (and made forays into eugenics), and conservatives who opposed such actions.

  • toto

    All of this naturally opens us up to the “slippery slope” rebuttal. I think that’s a useless argument and I’m going to ban you if you bring it up.

    Fair enough, but then how about defining an explicit, objective criterion for what you consider reasonable grounds for selection?

  • hsmom

    Do you really know anyone with Down syndrome? There is a special quality common to most every person with Down syndrome I know which they would not have if they didn’t have Down syndrome, so saying that the OP’s daughter would be the same if she didn’t have Down syndrome isn’t completely true.
    What about the compassion and care that is brought out in typical people, because they know and love someone with Down syndrome?
    Have you read the book ‘Gifts’?
    Your approach reminds me of a friends email tagline:
    ‘I wouldn’t wish a congential heart defect on my worst enemy, but I am a better person because of it.’
    Maybe Down syndrome shouldn’t be thought of as something to eradicate…they improve the lives of so many people they meet.

  • KBH

    It probably would have been useful to include a link about karyotype disorders, because comments like #4 contain the common argument against large–scale genetic intervention for more complex diseases, rather than the relatively small set of karyotype disorders, many of which are genetic dead–ends anyhow (Down’s being an obvious exception). Here is a decent one I found: http://www.biology.iupui.edu/biocourses/N100/2k2humancsomaldisorders.html

    Given the implicit criteria, I think you could also add (for lack of a better term) “binary” genetic disorders like CF. You will not lose the diversity inherent in the carrier genes being present in the population, but you will lose its manifestation.

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

    defining an explicit, objective criterion

    there is no objective criterion in a fundamental sense. this is a matter of values. analogy: you’re vegetarian for ethical reasons of harming animals. great. but don’t plants live too? ah, but you draw a line there based on your normative criteria. a slippery slope argument is valid, but also (excuse the terminology in this thread) retarded.

    Do you really know anyone with Down syndrome?

    yes. well, i did. i spent a term as a special ed assistant at my HS.

    they improve the lives of so many people they meet.

    i don’t think we should view humans solely as ends toward the betterment of others.

    i also hope heart defects go away, fwiw.

  • Ria

    I agree that ideally, we all would like to provide the opportunity for each and every child to live as beautiful, intelligent, and healthy individuals with as complete a life as possible…and disease free for life, if that’s an option. Where it’s not an option, however, society has two possible responses (while research is ongoing to solve the disease, of course): acceptance or marginalization. Acceptance brings several benefits, not just to the affected individual, but to those who are responsible for the care of that individual. Prioritizing care for someone other than one’s self to the degree that caring for someone with a serious disease requires is a major labor of love, and requires sacrifice…this can result in personal growth for the care-giver. Obviously, acceptance by society rather than marginalization makes the life of the person who is already suffering from the disease much more pleasant than it would otherwise be…although I see little evidence for acceptance in our society for birth defects. Most of the sympathy in our culture is reserved for late-stage diseases (cancer, Parkinson’s, Alzheimer’s) that may strike anyone at any time. I think that this is due to fear. Apparently I have a negative, cynical view of the typical American ethos.

    The blow back from parents of children with DS comes, I think, from the fact that society at large views these parents negatively for ever having brought that child into the world instead of having aborted that child. I’ve certainly been on the receiving end of such comments about my brother…that it was unfortunate that my mother chose to keep him instead of aborting him (he has spina bifida), because after all, he would never be anything but a drain on society. This is not true, as he’s a tax-paying full-time employed teacher and adjunct professor. Of course, those comments were highly offensive…so it may be understandable that such comments and attitudes would elicit immediate and strong defensive reactions. Unfortunately, as Americans, we aren’t inclined to react well to anything that might force us to redirect our energies in a direction we have not chosen, as a child with a disease or a spouse/child/dependent who is in an accident or who develops a later onset disease often requires.

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

    Where it’s not an option, however, society has two possible responses (while research is ongoing to solve the disease, of course): acceptance or marginalization.

    you just win your argument by setting up the terms as a dichotomy. that’s low. don’t do that again.

    . Of course, those comments were highly offensive…so it may be understandable that such comments and attitudes would elicit immediate and strong defensive reactions.

    people are, unfortunately, assholes. but i still agree with the title.

  • AG

    That comment is about psychological rationalization of tragedy which is too much to accept for some people. They should learn to keep those rationlizations in their heads. Otherwise they only bring more pain to themself by adovacating their psychological defense as truth.

  • http://backseatdriving.blogspot.com/ Brian Schmidt

    With a few hesitations, I would likely agree to a medical intervention that “cured” me of my current intelligence level and made me a lot smarter. I probably wouldn’t do it though if a side effect included drastic and unpredictable changes to my personality – that would almost feel like killing me and replacing me with someone else.

    On an intuitive level, the father of the DS girl may be reacting the same way, attributing positive aspects of her personality to her DS. Where that’s wrong is that we’re not talking about curing an individual’s DS with potentially dramatic personality changes as a result. Instead we’re talking about reducing the frequency of DS in the future, and I agree with Razib.

  • Jenny

    I guess I am a bit confused even after reading your very elegantly written post. Are you saying then that we as a society should invest more into scientific research to help cure diseases or at least mitigate the most limiting aspects of a disorder? Or are you suggesting that the way to a cure is by killing the patient before they are born or perhaps at some other time? As a physician I have a lot of patients who would really not like your idea of a “cure.” I find the idea that we can “abolish” disease simply by eliminating the patient a little difficult to conceptualize much less defend.

  • Lisa

    So what if you think it’s bad? Does it change the fact that people with DS exist? I might argue that old, wrinkly, deteriorating (but previously tall, handsome and intelligent) are also bad. What do you propose? Should we off them in the name in the spirit of your article, ostracize them or minimize the impact of their existence? How about we live and let live. You have conceded that their lives are not considered the ‘best’ by society at large. How about we help them get a leg up instead of further bringing them down. I grew up helping feed children in a school for severely handicapped kids. Many children were much worse off than those with DS but you focus on DS for two very naziesque reasons; 1 they are clearly identifiable by their facial characteristics and, 2 they are in the minority so it’s easy to turn the majority against them. It’s a slippery slope. Much like a SAT test, ask yourself what the purpose of your article is; to educate, to inform or to persuade others (to further minimize an already challenged class). If you answered the latter, then you get my point.

  • hsmom

    Do you really know anyone with Down syndrome?

    yes. well, i did. i spent a term as a special ed assistant at my HS.

    As I suspected. Spending a few hours a day for a few months out of your/their life in a school setting hardly constitutes ‘really’ knowing someone.

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

    I find the idea that we can “abolish” disease simply by eliminating the patient a little difficult to conceptualize much less defend.

    first, i specifically said we can’t abolish disease. thou shalt not lie.

    second, a lot of you are reacting emotionally. that’s fine. but if it keeps happening i’m just closing the thread. my weekend baby duty is coming up and i won’t be able to monitor threads, and don’t want too much devolution. my major point in the post was to assert that there are standards of excellence which we implicitly as a society and as humans accept, and that for various reasons our mainstream culture is not elucidating those standards. e.g., the cult of self-esteem, radical leftists who think that all standards are social constructs, social conservatives who have concerns with a revival of social engineering in the old progressive mode.

    for example, here are a few alternatives:

    having DS is worse than not having DS
    being stupid is worse than being smart
    being short is worse than being tall
    being ugly is worse than being beautiful
    being graceless is worse than being graceful

    we can disagree on the details. what is one person’s graceless may be another person’s candor and frankness. but, there are a whole host of things where many of us believe that one state is better than another state. that doesn’t give us license to be mean/rude, or to dehumanize, the ugly/infirm/weak/stupid, etc. but to develop genuine ethical sense and system we need to establish that some things are preferred and some things are not. as it is right now we don’t elucidate this. when the parent of someone with DS talks up the disease as enriching their lives, i think most people think they’re full of crap. most people might be wrong, but no matter what this public/private deception is corrosive to a genuine conversation about values.

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

    fwiw, anyone bring up nazis will be banned from now on.

  • Darkseid

    I feel that i have to add that it is truly sad that Razib ( and others) actually have to explain why DS is bad. Does anyone know if this type of contrariness/political correctness existed before very recent times? I can’t imagine it necessary to write an explanation to back this opinion during, say, the 50’s. People would just agree and move on back then (?) I will also add that I recently learned virtually all males with DS are sterile. i did not know that.

  • Karl Zimmerman

    KBH-

    I’m aware of the difference between a karyotype disorder and other human differences. But Razib “widened the net” himself near the end of his post. If something like tallness (which I still disagree is superior to shortness, as the female selection effect seems to cancel out the male one) is fair game to be considered better, surely things like clinical depression are as well.

    hsmon –

    If Down’s kids improve the lives of people, and they lead happy full lives, should we engineer more of them? How many?

    Also, you’re kind of proving Razib’s point with your replies here. Razib is talking about objective reality, and you’re bringing up subjective experience.

    Ria –

    You realized you argued slippery slope right there? By arguing that somehow admitting that a profound mental disability was a bad thing, we are in some way making it more stigmatized, and hurting those already here.

    Care and tolerance of the disabled has probably never been better – I don’t see why history would swing back, as it seems to be part of the same “civilizing process” that Stephen Pinker talked about in his last book.

    Lisa –

    If I argue that cancer is a bad thing, does that mean that I’m arguing all people who have cancer are therefore icky, inferior, and should vanish?

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

    I should note despite your avowed conservative philosophy, the thrust of the second-to-last paragraph is essentially progressive in nature. Believing that the human race, both as individuals and as a whole, can improve (not just technologically, but socially) is a hallmark of enlightenment liberal thought.

    when it comes to the short-term i am a conservative. but when it comes to the medium/long-term, i’m a radical. e.g., my sympathy for singularitarianism.

  • jb

    When parents choose to abort a Down Syndrome fetus, they will very often go on to have a normal child, a normal child who would not have existed had they not chosen to abort!

    This is an important point that I rarely see raised in regard to the ethics of abortion. The common oppositional rhetoric is that you are trying to cure a disease by killing the people who have the disease (bad!!!), but at the point where the abortion decision is to be made we are not talking about actual people at all, but potential people. There is of course the potential person who will come into existence if there is no abortion. But always forgotten are the myriad of potential people who might come into existence if the DS fetus is aborted. Whenever parents choose to bear and raise a DS child, they are almost certainly denying existence to a normal child they could have had instead!

    Of course there is nothing wrong with denying existence to potential people. Every woman who deliberately chooses to stop at two is denying existence to all the additional children she might have had (any one of which, let’s not forget, might have gone on to cure cancer!). But whenever a parent talks about the joy their DS child brings, this is a natural (if somewhat cruel) response: What about the child you could have had instead?

  • http://www.reddit.com/r/Anthropology/comments/tkyut/down_syndrome_is_caused_by_a_duplication_of_the/ DS Group Selected?

    “A single chromosome duplication is essentially the largest copy number variation one can define. Because these block-mutations just vary the copies of existing information (rather than adding new stuff) the less deleterious ones are now believed to be behind a lot of our species’ phenotypic variation (in addition to SNPs). My hypothesis is that very rare natural events that lead to cancer epidemics may strongly select for a simple mechanism that maintains, through meiotic hardware, a tumor-suppression phenotype.” –hypothesis983

    The full note: http://www.reddit.com/r/Anthropology/comments/tkyut/down_syndrome_is_caused_by_a_duplication_of_the/

  • April Brown

    Things that shorten lifespans (Downs… tends to correlate with heart defects) and deafness (definitely a longevity bonus to being able to hear fire alarms and honking horns), are especially tragic. All for making the best of a bad situation, but I agree – it would be nice if Downs didn’t happen anymore.

    (That’s not a call for societal wide terminations of Downs pregnancies. Just wishful magical thinking.)

  • Ria

    #19. You apparently misunderstood my post. I wasn’t arguing that DS is good. I was arguing that the _people_ who have DS have value in and of themselves and should not be stigmatized for the disease that they have. Just like those with AIDS should not be stigmatized for having AIDS. DS is not good…and you can tell that that is what I meant because the first few sentences of my post dealt with supporting research to find a cure (or treatment), and agreeing that disease is not the ideal condition. But what are you going to do about taking care of the people who have DS in the meantime? That was my question. So, no slippery slope. Just a practical issue.

    Pinker is not what I would consider to be an authority on a “civilising process”, since he would certainly be in favor of abortion or infanticide of any child deemed unfit for any reason (New York Times, 1997).

    The care provided for the disabled who are in group homes is certainly quite good, typically, but available positions have long waiting lists. The care provided for the disabled in institutional housing is not. Abuses are frequent (both from other patients and from the staff). We are in this situation because most families choose not to have a mentally disabled child/adult living with them any longer, as used to be the case prior to the 17th century (as there were few other options). That doesn’t reflect much tolerance….instead it reflects the fear that I mentioned in my previous post. Fear of difference.

  • Jonathan

    There are a lot of people who are born without genetic defects and live perfectly useless parasitic lives. tthey have all this potential and it is wasted. They are disabled in my book. You are looking at DS people from your point of view, which is limited to say the least. Everyone has something to contribute to society; how we deal with the disadvantaged is the true measure of our civilization.

  • Jim Johnson

    I’d like to comment here that a lot of other commenters have said things that makes it clear they feel Razib is advocating that we view disease victims negatively or treat them negatively. (“Or are you suggesting that the way to a cure is by killing the patient before they are born or perhaps at some other time? As a physician I have a lot of patients who would really not like your idea of a “cure.”)

    Really? That’s your take away? That’s what you think he’s saying?

    If Razib had said anything even close to that, I’d agree with you. Euthanasia, or even marginalization, of any person for such a reason is indefensible.

    However, I’ve reread his post & his rebuttals here several times, but I can’t find anything saying or even implying Razib is advocating ANYTHING about how we should behave toward those with the disorder (positive or negative). He certainly hasn’t advocated killing anyone.

    He does talk about the disease itself. Somehow, people keep posting comments as if the two were the same, effectively saying, “You hate Downs so you must hate people with Downs “.

    Razib is right. Downs is bad. People with Downs may be good. That’s a different question.

    “But people with Downs can live great lives.” OK. Nobody’s disputing that. But that is no argument that Downs isn’t bad – just an argument that those lives aren’t bad despite the Downs.

    That’s why our language has the phrase “in spite of”. Lots of good things happen “in spite of” bad things. That doesn’t mean the bad things shouldn’t be thought of as bad, nor that a cure for the bad things shouldn’t be sought.

    To me, confusing Razib’s naming of Downs as “bad” by imagining this means he’s saying “people with Downs are bad” totally misses his point, which I take to be that by-and-large, these peoples’ lives would be better if they could live those lives without Downs.

  • Karl Zimmerman

    Ria –

    I understand you believe I misunderstood your post, but I did not. I realized unlike some of the other posters in the thread, you were not saying that it was a good thing. But you seemed to be saying until we could cure it (apparently magic wand style, not by making sure the mutation doesn’t result in human beings), we shouldn’t talk about it as if it’s a problem, because somehow this will lead to hurting parents feelings and causing stigmatization. Instead, we should pretend in public everything is fine, while some doctors somewhere labor in secret.

    The second part of your reply is absolute rubbish however. In the vast majority of human cultures, as well as western culture up until the last few centuries, children with visible mental or physical disabilities at birth were exposed to the elements and left for dead. Perhaps this wasn’t as true for Downs, as it’s often not immediately clear, and women seldom abandon their children after the first 24 hours. But given the harsh realities of life as a peasant in most cultures, I doubt families had much time to look after their child.

    There must have been a reason institutionalization was promoted as an alternative, and widely accepted. Even if the implementation of the care was horrible, the fact that society realized a need for organized care marked social progress, and undoubtedly some (particularly those prone to violent outbursts) would have otherwise been locked in attics anyway.

    So don’t sit back and romanticize the past here. We are undoubtedly caring for the disabled better today (measured as a sum total group) than at any time in human history.

  • Raimo Kangasniemi

    People with DS wouldn’t be the persons they are now if they wouldn’t have DS. That’s a fact with which their relatives have to live with and they have to make the best out of the situation. Their loved ones are not people who are deformed or scarred (figuratively) because of DS and could otherwise have been better yet the same persons, DS is part of what they are.

    Either you value the person you have and accept their condition as part of what they they are, or you see the person with DS somehow defective and lesser as a human being as a result.

    I consider myself a very progressive person, I understand and even support the abortion of those fetuses suffering from DS, but I applaud the relatives of DS people who value their relatives and give credit to them and their lives. People with DS are not lesser people, they are just people with DS.

  • pconroy

    @11,

    I totally agree!

    I knew a 40 yo DS victim, he was 5′ 10″ and built like a bull. He lived with his parents, a few doors down from me, who were in their late 60’s and they were terrified about what would happen to him when they died. When guests arrived at the house he would immediately approach and hug them unconditionally – usually a very powerful bear hug, especially to females. He had to be told repeatedly by his father who was 5′ 7″ and much more lightly build, to put girls down. If he took a liking to a girl he would approach and try to hug her every 30 minutes or so. I remember his father yelling at him that he would have a time-out in his room…

    I wouldn’t want to be in either of their shoes.

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

    . People with DS are not lesser people, they are just people with DS.

    if you keep putting words in my mouth i’ll ban you. if you respond to this angrily i’ll ban you.

    i’ll keep this thread open as it’s kind of educational i guess. though probably close it tonight.

  • Raimo Kangasniemi

    I don’t intend to put words into anyone’s mouth, nor do I tend to answer angrily; my post was not intended to be a direct answer to the original post, it was more brought forward by reading the comments about the original post than it itself.

  • Raimo Kangasniemi

    pcconroy, I have had to witness enough bad behaviour – sexual harassment – from quite normal men towards women so that I don’t think that such behaviour from DS persons should be given that much importance. The father had the son to a control to a large extent based on your post, try to instead intervene when a drunken, quite normal man in a bus starts to grope women. I have intervened – to”Who are you to tell me what to do!” shouts – and I would vastly prefer dealing with a DS person who is unable to act in a socially acceptably manner.

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

    I would vastly prefer dealing with a DS person who is unable to act in a socially acceptably manner.

    dude, parents of some of the larger people with DS who exhibit less self-control have to deal with this every day of their lives. that’s what paul was talking about. so yeah, if you are willing to sign up for that instead of dealing with random jackasses every now and then during midsummer, step right on up!

  • Tomasz R.

    Dviersity is not comparable to dieseases. Diversity contains positive adaptations that are not always recognized as such by majority. Eg. people living in high mountains are better being short and muscular, while people living on flat lands benefit from longer limbs and slim frame. So “taller is better” stereotype is not justified. There’s also a conflict between strength capacity and endurance – even though muscules are found attractive they can be detrimental for some movement profiles. Same with aspects like size of female boobs – smaller sizes are more practical for the owners than large ones, even though larger ones are valued by the opposite sex. Smaller size of a human is a good adaptation for famines. Shyness and introversion are good ways to survive extremely cruel dictatorships.

  • Ed

    I think beauty is subjective to an extent. For instance, my Korean friends think women like Lauren London and Megan Fox are ugly! They prefer women who look like anime characters or “painted dol”l K-Pop stars.

    relevant
    http://tremblethedevil.com/?p=2595&page=2
    I’m not sure of the scientific integrity of the source myself to be 100% honest.

  • Justin Giancola

    “e.g., my sympathy for singularitarianism”

    rolls eyes :) lol

    Razib, starting this thread was like walking through the bad neighborhood, you know you should’ve gone around, cause of the principal of the thing. :D Chooseth your battles, my friend.

    Sometimes times a public “my bad” is more productive, and spread your word in a more grass-roots, and personal fashion, in private. No elegance of words can always over come the inadequacies of the setting/set-up.

    Sorta like Haidt’s: you gotta talk to the elephant first! :D

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

    #36, what are you even talking about?

  • Justin Giancola

    that this post was unlikely to not get the reactions you did get: eg. the choir, and mischaracterizers/bashers. ie. you knew you’d be saying no nazi this and I’ll ban you that.

    the outing was maligned from the get-go.

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

    dude, sometimes you need to shut the fuck up. you don’t always know what my intent was.

  • Justin Giancola

    umm, ok. my bad dude, sorry.

  • Jennifer

    Reading the original article and the comments, I have this to add. I have twins daughters. One is “typical” one has Down Syndrome. The day we had them, we found out the news and it was “bad”. It is not what you wish for. They are eleven now, the shock of the “bad” of her genetic condition has worn off and she is just who she is. Not bad or good, just herself, just like my other daughter.

    I agree when parents say how great their child with Down Syndrome is, they are responding to the feeling that many people think their child does not have value as a human being. They get defensive that they have to PROVE their value every day. Other people don’t have to PROVE their right to exist. The abortion rate is reported to be around 90% for fetuses diagnosed with Down Syndrome. This is scary to the parents of people with Down Syndrome because people believe their child should be extinct. It is hard not to be emotional about that.

    There is difference between saying a condition is “bad” and saying that the person does not have any value. I believe all life has the potential to add value and all life has the potential to be worthless. That is the concept of free will. Let’s be honest, most of us don’t meet our full potential. So that is the “slippery slope”. I believe people with family members that have Down Syndrome are offended that you are just looking at them as a condition not as an individual who as the same right to exist as any other person.

    Razib’s response “i don’t think we should view humans solely as ends toward the betterment of others” is the only thing I really take issue with. As humans we are not “solely” here for the betterment of others, but what a great side benefit. If we are not here for the betterment of others, why are we here? Why do we respect Gandhi and Mother Teresa? Why do we love lines in movies that say “you make me be a better man” ? I believe we are here to have relationships that make us better people.

    Both of my daughters have made me a better person. The one that has Down Syndrome has made me grateful for the things I can control and accept the things I cannot. And she also makes me realize that maybe sometimes the things I cannot control are the real gifts. Would I want her to have Down Syndrome if I could have prevented it? Honestly, no. Do I think she has value and has the same right to exist as my “typical” daughter, ABSOLUTELY. I am grateful and proud to be the Mom of both of them.

  • Jennifer

    BTW,

    I don’t think you were trying to comment on the value of people with Down Syndrome, just that the genetic condition in and of it’s self is bad. But I am trying to say it is not bad, just a trip to Holland instead of Italy. If you have not read this essay, you should: http://www.our-kids.org/Archives/Holland.html

  • Sandgroper

    ‘they are responding to the feeling that many people think their child does not have value as a human being’

    ‘people believe their child should be extinct’

    Your inferences are actually disgraceful. The majority of people behave more altruistically than you seem to be willing to give them credit for. Do you seriously think that ‘people’ think your daughter should ‘be extinct’?

    ‘why are we here?’ – Chemical accident.

  • jKlm

    #43, Yes, we parents really DO feel that some (not all) people think that our children should not exist. It’s hard not to believe, looking at some of the posts that people leave on this and other articles on the topic.

    Interestingly enough, people rarely, if ever, respond to my daughter that way (well, but I have gotten looks, or rather, non-looks). Are they just being polite? Perhaps. Or, it’s easier to dismiss a theoretical “type” than a flesh-and-blood human being standing in front of you, who is cute, funny, and charming. Usually that’s the way people respond to my daughter–as a cute little girl.

    This is an interesting dialogue–I appreciate hearing peoples’ honest opinions–at the same time, it is hard not to feel defensive or wanting to convince people how great your kid is.

    Caring for a person with Down syndrome is difficult–I wouldn’t wish it on any family, and if I could magically take away her DS, would I? Probably. Sometimes I wonder what my daughter would be like without it? She might be even cuter or funnier. Then again, her DS does form part of what makes her unique, and even though it is cliche, having her in my life has made me a much better (and happier) person.

  • Sandgroper

    “Yes, we parents really DO feel that some (not all) people think that our children should not exist.”

    Not to trivialise, but some people still disapprove of miscegenation. If we’re going to talk about “some people”, it will never end. Some people are psychopaths.

    General observation – I have seen some people not looking at DS people. True. From what I see, some people’s reaction to any kind of disability or visual or behavioural difference is not to look at it. But I have seen some people just not notice them too. In public it is actually quite easy not to notice that a child is DS, simply because their appearance and behaviour are really not that far from normative; I have done it myself – just not noticed for a while. It can be quite difficult to spot quickly in public if the DS person is Chinese among a crowd of other Chinese people (people used to call the condition ‘mongoloid’, right?) Many are pretty capable people, and I would need to be a bit of a moron not to know that there are some high profile DS actors and DS people who hold down regular jobs, who incidentally seem to distinguish themselves by their conscientiousness, to the extent that I wonder if that is ‘characteristic’.

    I have had a kind of defensive reaction from the parents of DS kids because I *have* looked at them and smiled at them, in a culture where it is quite normal for adults to look at kids and smile in a friendly way. I don’t blame them for that either. The reactions I see from most people everywhere who notice is rather kindly, maybe because most people (i) know it is difficult for the parents, (ii) have some grasp or understanding of the condition and realise what gentle, loving and often sweet/cute people DS people generally are. They certainly do not suggest that the majority think your child should not exist. I think it’s kind of unworthy not to recognise that most people are pretty compassionate/altruistic at a person-to-person level and are certainly not sitting there thinking “That kid should not exist.”

    That is not at all the same thing as people thinking that it would be a good thing if future children could be prevented from being DS.

  • Alex

    The major flaw in this post is that it fails to distinguish between effects on individuals and effects on society as a whole. Height is one clear example. A person who is seven feet tall may do very well in a society with an average height of five feet, but a society where the average height is seven feet is no better off than a society where the average height is five feet.

    So, when discussing what traits are advantageous or disadvantageous, we need to consider if they just give the individual a competitive advantage or if they actually provide a real benefit. Intelligence and health are definitely in the later category, but I fail to see how raising the average level of attractiveness makes society happier. Asian women are objectively more attractive than European women, but does that make Asians happier than Europeans?

  • AG

    Once upon a time, I saw people arguing over each other and calling each other names in a clinical lobby due to (genetically) malformed girl passing through with her parents. It was all because some (about 50%) people in the waiting lobby made coments that such child should not keep alive. All hell broken lose. The parents of deformed kid did not participate the arguement. But you can imagine how they feel. At end, hospital had to have quarrelling people seperated.
    For certain issue, people can not handle the truth. Religions, psychological defense, or self-delutional belief are only way to prevent people from deteriating into depression and suicide. It is actually easier for dull people to do so since they are not sure what is truth in the first place. Ignorance is bliss some time.
    When I noticed some people arguing me with blatant bullshit, I simply would not continue. 1. It is wasting time to argue with idiots. 2. It is heartless to hurt people who depend on self-delution to survive. I can not handle some one’s suicide because I told the truth. But I have no problem telling 3ird party truth if they preached by self-delutional people.

  • Brad

    To address Brad more specifically: his daughter’s Down Syndrome is not a necessary condition for her being a wonderful and amazing person. I wish she did not have Down Syndrome.

    Being tolerant of a reasonable range of genetic and phenotypic diversity does not mean that one should be equanimous to the birth of people with karytotype abnormalities.
    Diversity is not strength when that diversity is diversity of disease. Heart disease, congenital defects, disfigurements, obesity, and mental retardation are not strengths. They are all tragedies of various degrees.
    It is doubtful we can abolish disease, but we can make a dent it in.

    Our values will guide our actions. Let’s have a frank and honest discussion about them.

    Hi -I think it is important that I make clear that unlike the author, as my child’s father, I do not wish “she did not have Down Syndrome” – I love her very much for who she is today.

    The author refers to my daughter’s extra chromosome as a disease. While circles of the medical community refer to it as a disease, a bigger problem arises with the use of the word “disease” – people immediately assume “eradication” would be the solution. A genetic “disease” is very different from a classic “disease” – an external being attacking one’s body. If I had polio or cancer and you could eradicate those diseases, I would be the same person in spirit, but without the added health and psychological impacts of the “attack of something foreign”.

    Eradicating my daughter’s genetic makeup would eradicate the person I love. I never spend time wishing for a Brianna without Down syndrome. I do hope there are ways to ameliorate some of her symptoms (I gladly put her under the knife to fix the hole in her heart). I would like to see educational and scientific research be able to help her function more independently in society versus the prior generation of folks with DS. But that is very different than trying to take her DS away; I would never ask nor want that. Before you judge that, keep in mind that I have a real relationship with a real live person. I am not performing “what-if” scenarios from you keyboard. And I love this child very much.

    Once you refer to a genetic difference as a “disease” it begins to mutate the way you think about people with that genetic makeup. You begin using words like the author such as “being tolerant” and referring to my daughter’s life as a “tragedy”. No one asked the author if she could deem who “should be tolerated” in our society. It’s an unfathomable topic to come out of a person’s mouth – in my opinion. I can tell you my daughter has a happy life that no one around her would consider a tragedy.

    In truth, the vast majority of parents who have a child with DS don’t view their child, their lives, or their families as part of a tragedy at all. Most readers would be amazed to find how many of us view our children with DS as one of our biggest gifts – and we come from all religious/non-religious political and educational backgrounds you could imagine. Reading the surveys and demographic studies might be quite eye-opening to the enlightened reader.
    Lastly, I tie back an important sentence from the author: “It is doubtful we can abolish disease, but we can make a dent it in.” Abolishing this “genetic disease” can only be accomplished the way you would eradicate red hair. But, you certainly can put a dent in it if you continue to talk down about a group of people; perhaps more people will start to believe it.

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

    If I had polio or cancer and you could eradicate those diseases, I would be the same person in spirit

    in fact, many people who have had cancer say that the experience changes them as a person. who we are as people at a given moment a sum of experiences. also, the distinction between ‘classic’ and ‘genetic’ diseases is no useful. most humans in fact have genetic predispositions for various diseases (e.g., BRCA).

    Reading the surveys and demographic studies might be quite eye-opening to the enlightened reader.

    where are they?

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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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