I think Down syndrome is good

I want to have an easy life. I really do. I have no desire to get into Twitter wars and comment battles with Internet bullies.

But it keeps happening. Every time I think I’ve found a place of genuine cyber peace, every time I think I’ve grown out of it, something comes along to make me crazy. A monumental nincompoop makes a comment, or writes a blog post that absolutely sets me off. I can’t think straight. I can’t sit still. My brain goes into mega-payback overdrive and I don’t like it one bit. I don’t like to be at the mercy of monumental nincompoops.

But let me tell you about this one…

His name is Razib Khan. Never heard of him? Me neither. Not until today.

But today (well, yesterday by this point) is the day he decided to write a post on his blog, Gene Expression, which is hosted by Discover magazine, titled “I think Down Syndrome [sic] is bad.” The [sic] is meant to signify that the proper capitalization is Down syndrome. How do I know about the proper capitalization of the “s” in Down syndrome? Because I have a 6-year old daughter with Down syndrome, and I’ve been researching it for nearly 7 years, since we learned, when my wife was 5 months pregnant, of Magdalena’s Down syndrome. That’s how. Because I have some experience with this genetic condition that Razib Khan does not like.

First, let’s learn just how smart Razib Khan is:

Razib Khan’s degrees are in biochemistry and biology. He has blogged about genetics since 2002, previously worked in software development, is an Unz Foundation Junior Fellow and lives in the western US. He loves habaneros.

Razib is S.M.A.R.T., but not so smart that he knows how to use the serial comma. We all have our blind spots.

Here is what Razib Khan wrote in his S.M.A.R.T. post for Discover magazine’s website, which, as we will shortly learn, is read by a great many monumental nincompoops, a many so great that it defies belief.

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.

Again with the capital Syndrome. Just to catch you up, commenter Brad was taking Razib Khan to task for suggesting in an earlier post that Down syndrome is a bad genetic outcome. Here is Brad’s original 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 suspect Brad and I would get along famously. Despite his failure to use the serial comma, Brad demonstrates in his comment an admirable restraint. He could have been a little more pointed, but he held something back. I like that. It means he has compassion. He could have been more clinical, but he is too aware of the human dimension of a discussion about Down syndrome. To Brad, as to me, this ain’t no academic debate. This is real life. And you learn a few things in real life that you don’t learn in a lab. You hear me, Razib?

What Brad so nicely does in his comment, and what Razib Khan resolutely—proudly—fails to do both in his post, and in his online dealings generally, where he is consistently antagonistic to those who disagree with him, is to consider Down syndrome not merely as a scientific phenomena, but a human one as well. In the comment section of this post, Razib Khan also went out of his way to refer to one commenter’s analysis as “retarded.”

This is where we get back to me and my desire for a quiet life. Anyone who’s read this website with any frequency knows that I can’t hear that word without getting a little worked up. Razib, if you happen to find your way here, you can read all about that here and here.

I did my best to take a few deep breaths and let it all simply float away, but then this happened.

Ursula (@uhennessey) is obviously my wife. So, in the course of about an hour, this S.M.A.R.T Razib Khan managed to insult my wife, use the “R” word, and make some really underinformed—and I would say dangerous—remarks about Down syndrome on a high profile blog (what do you have to say for yourself Discover?).

That’s not even mentioning how he treated my new best friend Brad.

The sad part from my point of view—the really sad part—is just how many of the commenters on Razib Khan’s post agreed with him. Reading through the comments, it almost seems as if there is a large cohort of Discover magazine lovers who are secretly really disgusted by genetic variation, and Down syndrome in particular, and were just so relieved to finally have found an outlet for their views.

In the very first comment, commenter Spandrell addresses Brad’s feelings about his daughter: “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 immodest.”

Then, there were those like Raimo Kangasniemi, who had the gall to disagree with the great Razib.

“People with DS are not lesser people, they are just people with DS,” wrote Ramio. What did S.M.A.R.T. guy Razib have to say to that?

“if you keep putting words in my mouth i’ll ban you. if you respond to this angrily i’ll ban you.” That’s Razib’s capitalization problem again.

So what’s a guy like me suppose to do about all this? Take it? Eat it? Just sit back and let this jive turkey get away with insulting my wife and antagonizing those who love people with Down sydnrome?

Nuh uh.

S.M.A.R.T. guys like Razib Khan are in dire need of a stern talking to, and I’m ready to give it to him. My only regret is that I’m showing the world just how easy it is to get to me.

First of all, smarty pants, Down syndrome is not a disease. You should know that since your degrees are in biochemistry and biology (excuuuuuuuuuuuse me). Down syndrome is a collection of traits, physiological and mental, all of which occur to some degree in otherwise “normal” people. Don’t believe me? In Central and East Asia, people have almond shaped eye. Bad genetic outcome? My mom died from leukemia. She didn’t have Down syndrome. Short stature? Talk to the Portuguese.

And then there’s the low I.Q., hardly a burden borne just by those with Down syndrome. What should be the cutoff, Razib Khan? What is the I.Q. score below which we can feel comfortable disparaging the humanity of an individual, below which we can talk about them rather than to them, below which we can freely and openly discuss the benefits of maybe having been better off if we had killed them in utero? What amounts of beauty, intelligence, and health qualify a person to live a truly worthy life?

You can’t answer those questions, Razib Khan, because they require a depth of understanding about what it means to be human that can’t be found in a biology textbook. Life is more than one big lab experiment. There is more in heaven and earth than is dreamt of in your philosophy.

You know, Razib Khan, my wife was right. Your I.Q., as high as it probably is, has not served you well. Your intense intelligence, your superior record of achievement in the fields of biochemistry and biology, have let you down. They have let you down because they seem to have entirely crowded out your emotional intelligence. You view every discussion as a battle to be won. You view questions as threats. You think everyone is out to steal your genetic mojo. And you have demonstrated that you view guys like me, Brad, Raimo Kangasniemi, and a host of others who have taken them time to read your post and challenge you on some of your assumptions, merely as lobbyists for a weird, irrational Down syndrome agenda.

Laugh. Go ahead. I’m sure you find this amusing. But your delight in ridiculing those with lesser gifts than your own is telling, and it will be your undoing I am sure.

You are a monstrous nincompoop.

Eventually you will realize it. Eventually something will happen that shocks you out of your S.M.A.R.T. guy bubble out there in the “western US.” One day, you will realize that there is more to life than developing software, crushing guys like me and Brad in online debates, and then helping yourself to a handful of habaneros.

And on that day, you will finally know what it means to be truly human.

Call me when you get there.

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Comments

  1. I get why you’d be worked up about the issue, but let me offer you some advice which you are free to take or dismiss as you wish:

    * Repeatedly taking issue with whether someone capitalises the S in syndrome comes across as pedantic and makes one less inclined to connect with you, particularly when it’s near the start of your post. (Not to even mention the serial comma business.) If you are getting angry about that, it’s a ridiculous thing to get angry about.

    * Don’t complain too much about Razib insulting your wife, since it’s basically in response to her insulting him. Sure, you can get into a thing about who started it, or who said something worse, but there’s not that much difference between her tweet and his.

  2. Matthew Hennessey says:

    Thanks for the comment Mitch. And thanks for offering me the option to dismiss it. I will take that option.

  3. Figgy'sFriend says:

    I disagree with both of the comments above. I think Matthew’s first point is well made in the context of Khan’s effort to cast himself in a coldly scientific light. And there is a clear difference between the quality of Ursula’s comment on Khan’s blog, which invites readers to assess his personal belief system (“I believe that humans flourish best…but I bet…”). She does so fairly rationally and constructively. He calls her a name. (Oh – I guess the little smiley face is supposed to let us know that he doesn’t really mean it. Maybe he made a little frowny face in his head when he used the word retarded in what purported to be a civilized, intellectual discussion as well – you know, to make it ok. ) His response kind of proved Ursula’s point about his EQ. I think the most poignant thing Matthew wrote in this post is the thing that we need to keep reminding ourselves about when we engage in these discussions about topics we are so passionately certain of: it is easy to be right when the ground is firmly beneath our theoretical feet. But anything can happen, at any time, to any one of us that will change everything forever. So I vote for less science and more compassion.

  4. Figgy'sFriend says:

    Also I believe we should have compassion for the poorly written sentence in my comment that begins “And there is a clear difference.” Thank you.

  5. For what it’s worth, I think Ursula’s comment about Razib’s low EQ is probably fairly apt. But no one likes that sort of thing being pointed out to them. If I said that to someone, I wouldn’t be all that shocked to hear them say something insulting back to me.

  6. Thank you for this post. Khan’s blog post was about the worst birthday present on the day my daughter (who happens to have Down syndrome) celebrated her eighth birthday. I agree with you that Down syndrome is good, and Dr. Brian Skotko and his colleagues have contributed studies that support that assessment: http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P766.html
    Seriously, how many of us with 46 chromosomes would respond as high as those with an extra-21st regarding being happy with their life? I doubt we’d also hit the same percentage of having family members say they consider themselves better people because they were related to us. But that is the case with Down syndrome, and, therefore, the argument can be made that Down syndrome is not only good, but it’s good for all of us.

  7. Matthew Hennessey says:

    Mitch, that’s a fair point. Thanks for your comments.

  8. Matthew Hennessey says:

    Mark, Happy birthday to your daughter. I have an eight year old as well! I sometimes want to ask people like the author of that other post: After all is said and done, who’s to say that Down syndrome isn’t a net positive? We who meet and know these wonderful people not only learn a lot about ourselves, but we learn how to truly love another without conditions and without expectations. What could be better for the world?

  9. Anonymous says:

    I think the net positive comment is right on. If you are lucky enough to have a friend with Ds, you would know the extra chromosome is all positive matter.

  10. Maureen Sagan says:

    It is really telling that you have to resort to criticizing capitalization and punctuation rather than addressing any of his points. I would have expected a parent of a child with Ds to have something insightful to say on the issue; apparently not.

  11. Matthew Hennessey says:

    What were his points, Maureen? That it is better to be beautiful, healthy, and intelligent than it is to have Down syndrome? I think I addressed that.

  12. Maureen Sagan says:

    Matthew, I grew up with a little brother with Ds, and the idea that we would have been better off if my parents had aborted him disgusts me. He is now 20 and has graduated high school. I don’t think someone like Razib has spent much time with people who have Ds so that is where his clinical/detached attitude comes from. However, I don’t think he was directly attacking people who have Ds themselves, or claiming their lives aren’t worth living. That is not the impression I got from his article, and I’m a regular reader of his blog. I think what started off as a discussion about genetics quickly escalated into an emotional argument with people getting angry and taking sides, and that is unfortunate. My own opinion is that while Ds is not by default “bad”, I wouldn’t characterize it as “good” either. There is a lot more I could say about this but as it’s your blog I won’t clog up the comments with my opinions. Take care.

  13. Matthew Hennessey says:

    Well then you and I have some areas where we agree and some areas where we don’t. I have written elsewhere about the simple joys of parenting my child as well as the thornier questions surrounding genetic testing, medical science, ethics, and abortion. Those are easily found through this website if you are looking for a richer discussion of these issues. The author of the post that presaged this reaction was (and is) spectacularly rude and ill informed despite his multiple degrees and the prominent platform given to him by a national science publication. The purpose of this post was to point that out, nothing more.

  14. Maureen Sagan says:

    I notice you have repeated often that Ds isn’t a disease, but I can’t agree with that. Ds and Autism are interesting in that they can be a blessing for both the individual and family, unlike most disorders. There was an excellent comment, written by the father of a boy with Ds, which I will re-post here so more people have the chance to read it.
    “The name, Down syndrome was coined 100 years before the genetic cause of the disorder was identified which Jerome Lejeune then more appropriately renamed trisomy 21. Syndromes are associated with symptoms that have no identified cause. Diseases, or disorders are conditions in which the cause is understood and which have an identifiable group of signs or symptoms. Trisomy 21 is a caused by a chromosomal disorder resulting in an extra copy of chromosome 21. With regard to suffering, please remember that trisomy 21 is a neurodegenerative disorder and is also the cause of a multitude of associated maladies that researchers are working to resolve. There are many individuals living with trisomy 21 who do plenty of physical suffering, not just social or emotional. as the father of a 10 year do trisomy 21 son who is in remarkable physical health I completely understand the gift. He is a tremendous joy to our family and a great blessing from God. I know too, however, that unless researchers are successful his future could be quite difficult. Every individual with an additional 21st chromosome will have brain characteristics similar to an Alzheimer’s patient by age 35, and this is without exception. To not acknowledge the true nature of trisomy 21 as a genetic disorder and therefore support research oriented to resolving the many cognitive and physical disabilities associated with it is to turn a blind eye toward an often unpleasant eventuality – an eventuality that I’m willing to work very hard to overcome.”

  15. Anonymous says:

    Whose to say a child with DS can’t be beautiful, healthy, or intelligent. I have a 5 yr old daughter with DS and I promise you she is beautiful inside and out. She is just as healthy as her siblings. As for intelligence….she is so smart, I am amazed everyday. Anna may never run as fast as the other kids, she may always have a crooked lil’ smile, and she may always need a little extra help to solve a math problem, but I wouldn’t trade her for anything.

  16. Stephanie says:

    No serious research scientist would blog on Discover.

  17. Abelard Lindsey says:

    When people mention “emotional intelligence”, they are really referring to executive function (even though they may not realize it). Executive function is at least as significant as IQ for successful life outcome. There is no such thing as emotional intelligence.

  18. Ursula Reel Hennessey says:

    Hi, Abelard. Thanks for your comment. Actually, I didn’t mean executive function. I suppose I could have said “zero interpersonal and intrapersonal intelligence” but it was a twitter comment, after all 🙂

  19. Abelard Lindsey says:

    I read both your’s and Razib’s postings (I’m a long-time reader of Razib’s blog) and think that both of you are correct. I also think that Razib is pretty damned insensitive to have started the whole discussion in the first place, even if the point he was trying to make is correct.

    I read the previous post about the “magic pill” and your rejection of it if it were available. You do not consider Down’s Syndrome to be a disease conduction. This is fair enough. Most people do not consider the aging process itself to be a disease. I do. Let me ask you this:

    Say effective anti-aging therapies were developed. Perhaps they are some sort of gene therapy (somatic, not germ line) or perhaps Aubey de Grey’s SENS therapies. Would you have any problem with me personally choosing to undergo these therapies in order to cure myself of the aging process? If you do, why?

  20. Ursula Reel Hennessey says:

    Hello, again, Abelard. This is Ursula, Matthew’s wife. (The comment above is from me, as well.) I will respond, but since Matthew wrote both posts you refer to (the response to Razib and the “magic pill” one), he may want to respond further.

    I would have absolutely no problem with you choosing to undergo these therapies! My frustration with Razib and others stems from their mistaken belief that, of course, *all* people must agree that Down syndrome is bad even if the person is basically okay. Their assumption seems to be that if you don’t agree, you are deluding yourself or are blinded by irrationality in the form of faith or love. I don’t agree with this idea. We have come to see Down syndrome as a powerful source of and force for good for our family, our other children, our community, and, yes, even our child who has Down syndrome. The good that has come from her life absolutely dwarfs the negatives. I freely admit that the negatives are formidable: health issues, struggles with age-level academics, etc. Someone with a low EQ (errrr … sorry, a low interpersonal or intrapersonal intelligence) may not understand that or want to even have this conversation. Second, it seems impossible isolate a single aspect of a child — or any person, for that matter — as indisputably “bad” while assuming that if it were removed, the rest of her (and others like her), would remain recognizable. Would I ever ask a scientist/doctor to “remove” my other daughter’s tendency toward dreaminess or distraction? Why, no! It may also somehow change her ability to be deeply sensitive to people and situations. I would not toy with such things. I believe there is a delicate balance that must respected.

    Now, on to aging. By all means, I support the right of folks to choose to get lip puff enhancements and Botox, etc. I believe it looks absurd, but I would never demand that those people lose that choice. Likewise, by all means, choose to curb or reverse the aging process if such technology/science makes that possible. However, please do not assume that all people must desire such things and, if they are of right mind, must agree that aging is bad. I do not. Aging of the body and mind, in my opinion, serves a purpose. I trust in the process, do not fear it, and therefore would not seek to change its path.

    Finally, I would say that my faith makes it much easier for me to have such trust. I believe that all things happen for a reason; I believe that another, better, place awaits me and my loved ones. If I did not have that faith, I would likely feel very differently about the topics discussed here.

  21. Abelard Lindsey says:

    Sounds reasonable to me.

  22. Maureen says:

    It seems to me that Ursula and Matthew are very lucky that Magdelena is healthy and happy, and so they proclaim “Down Syndrome is good!” Now imagine if their daughter had died in early childhood as a result of a congenital heart defect, a common side effect of Ds – would they still be proclaiming Ds is good? Probably not. Similarly my family is lucky that my brother Ethan who has Ds is 20 years old, happy and healthy (on meds but easily manageable). However we have met families that are far less fortunate and so I think it’s insensitive and ignorant to proclaim Ds is “good” when there are many parents who have to watch their children die young, or spend life confined to a wheelchair, unable to walk or talk.

  23. Matthew Hennessey says:

    Yes, we are indeed lucky. But we also know many families who have children, both with DS and without, who struggle with very serious medical conditions. We think all life is precious–no matter how short.

    http://www.lifenews.com/2012/07/24/study-parents-of-kids-with-disabilities-beating-abortion-culture/

    The title of the post was in response to a Discover blog post which was titled “I think Down syndrome is bad.”

  24. He wrote “Down syndrome is bad”, and somehow you seem to have read “People with Down syndrome are bad/worthless”.

    Your emotional response is entirely understandable, but it’s still an emotional response.

    Thought experiment: if you magically had the power to add a 3rd chromosome 21 to every other child born at your local hospital this month next year, would you do it?

    If not, then you don’t really think Down syndrome is good. You think people with Down syndrome are just as good and worthy as people without it. Razib doesn’t disagree with you on this.

  25. Matthew Hennessey says:

    Far from being — as you attempted to denigrate it — an emotional response, my response to the original post was in fact the product of seven (plus) years of thoughtful refinement of my views and attitudes on the subject. My emotions were merely the key that provided the spark that started the car. The engine and the pistons and the wheels and the petroleum were all there, ready and waiting. Anyway, toto, since when is an emotional response an invalid response?

    Thought experiment for toto: If you could somehow isolate and remove all of the things that make you who you are — your personality, voice, skin color, sexual orientation, physical features, emotional life, cognitive abilities, blind spots, pseudonymous tendencies — lay them on a table and then make what you thought were rational and objective decisions about which to keep and which to discard, would you do it? Should you do it?

    It’s not a simple question. Nor is it merely a science problem.

    But you are right: I do think people with Down syndrome are just as good and worthy as people without it. I also don’t think blue eyes are better than brown eyes or that being gay is worse than being straight. These things just are what they are. I pay people with Down syndrome the respect of not suggesting that they are ill or deficient by virtue of the 3rd copy of their 21st chromosome. Their disabilities may be easier to see and diagnose than others’ are, but nobody’s perfect. Nobody here can say they have it all, not you, not me, not Razib. So we’re just talking about shades. Some of us did better in school than others. Some of us can’t tell when we’re being insensitive or hurtful. Some of us think it’s okay to lie sometimes, some of us don’t. Some of us can hit a curve ball, some of us can’t.

    Who we are doesn’t make us good or bad. What we do does.

  26. Ursula Reel Hennessey says:

    Toto, diversity is good. So, to re-phrase or re-think your question, would I cause every new baby born at a nearby hospital to have blue eyes? No, that would be bad. Uniformity is bad. I think it’s “good” to have a few with blue, brown, green, etc. I’d like a few to be visual learners, others to be kinesthetic learners, still others who ace “traditional” tests …. Who is to say what is good or bad? Seems silly, really, which is why Razib deserves a response from people who have actually undergone the “experiment” of having and knowing, deeply, a child with Down syndrome. Not simply emotional, but, yes, does encompass the truths of humanity.

  27. Can we unpack a the word ‘good?’ By good do you mean ‘desirable?’ Don’t you think it would be misleading for someone who didn’t care about eye colour to label one colour good or bad? Are you honestly surprised that people don’t want their children to have trisomy 21?

    Imagine that you have two drugs that cure the same fatal disease. They both have side effects. Drug A increases a woman’s risk of having a child with trisomy 21. Drug B increases a woman’s risk of having a left-handed child. If you had to administer one of the drugs to an unconscious woman in an emergency situation, which one would you choose?

  28. Ursula Reel Hennessey says:

    Ted,

    Let me unpack, shake out, and hang up the word “good.” Yes, I think a population in which Down syndrome occurs in approximately 1 out of every 600 babies is better — more desirable — than one where it does not occur at all.

    Your hypothetical example leads to tricky territory. What if the side effect is homosexuality? Manic depression? Having a child with homicidal tendencies? What if it’s discovered that left-handedness comes with a high incidence of fatal mid-life cancers? Where is the list — and who wrote it? — showing the list of traits/qualities which everyone agrees are “bad” and should be wiped out and those that are “good” and should remain?

  29. Left-handedness doesn’t predict cancer. Would you choose drug A or drug B?

  30. Ursula Reel Hennessey says:

    Oh, Ted, what a bummer! I thought we were playing a really fun and productive game of “imagine if…” and now you don’t want to play?

    Seriously, Ted. We appreciate you reading this post. But if after all this you don’t get where we are coming from, maybe it’s best we agree to disagree.

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