10.04.2009

In defense of "retarded"

Some of you loyal readers might remember that I was, until recently, pregnant. A month ago, I gave birth to a bouncing (and huge! and very cute!) baby boy.

We discovered soon after his birth that my son has some very rare chromosomal abnormalities. He will, most likely, live to adulthood. However, both his motor skills and cognition will be severely impacted, and perhaps his sensory abilities as well.

Among many other (and many far more pressing) issues we've had to think about in recent days, I've thought about the issue of language. We have received a crash course in the current terminology, e.g., my older son is not normal, he is typical. My newborn little guy will not be retarded, he will be intellectually disabled. He will experience developmental delays. He has special needs. (I have seen some references to letting parents choose their own words for the disorder their child has, but there are some generally accepted preferred terms.)

I do not have a knee-jerk aversion to politically correct updates of terminology describing sub-groups of people. Sometimes the alteration of language seems warranted, sometimes less so (Personally, I'm not a big fan of reclaiming insults, such as queer). However, if a group demands to be called something, and seems they are largely agreed...why not? The subgroup of which I'm speaking, though, has not demanded this change in language. Other people have decided this for them, presumably because words such as "retarded" have become pejorative. Such words no longer merely describe the condition, they also evaluate it (negatively). So others have, with the best of intentions, changed the language.

I see two problems with this.

1) The first is simply that it is less accurate.

Since 'normal' and 'typical' mean roughly the same thing, I'm guessing that the reason for the change is that the word 'normal' is derived from 'norm,' and thus has connotations that 'normal' is the state that one ought to be in, whereas typical has nothing to do with oughts, and represents instead the state most people actually happen to be in. But the thing is, of course I would rather my son did not have disabilities. Aren't we all agreed on this? One ought to aim for optimal cognitive and motor development. This is why we tell pregnant women not to drink or smoke or take certain medications. This is why we tell parents to talk to their babies and play them music and not shake them. I will do everything in my power to use early intervention strategies to help my baby walk and talk. In other words, I will aim for him to have as close as possible to the kind of life that his brother is expected to have. So there is a way one ought to be - it is better to be able to walk than not. It should go without saying that claiming that one ought to be disability-free if one possibly can is not implicitly claiming that people with disabilities should be treated as less than fully human or should not be appreciated and loved. The fact that someone is not what one ought to be is not a reason to reject a person. In fact (aside from Dan, of course) I don't know anyone who is everything one ought to be. I worry that it does not go without saying, however, and so I'm saying it.

'Intellectual disabilities' is technically accurate. I have found, however, that people take this to mean something akin to 'learning disabilities.' This gives the impression that with a little bit of accomodation, training, and extra time for exams, someone with such disabilities could perform college-level work. The word 'retarded' simply gives a more accurate picture to those not clued in to current terminology. 'Developmental delay' implies that he will develop normally, simply later. And 'special needs' dances around the problem. Yes, he does have special needs. But he has special needs because he has disabilities. The root of the issue is not his needs, but his lack of certain abilities.

2) The second is that it is pointless. People do use the word retarded pejoratively. But first of all, I suspect that many times, phrases such as "That is so retarded" or "What are you, retarded?" are something of a dead metaphor. Or, if not a dead one, at least not a fully live one...maybe an undead metaphor? I think many people have used such phrases without summoning an image of someone who is actually mentally retarded -- I know I have. (Dan -- want to step in with your thoughts on "That is so gay"?)

Even if it's not a dead metaphor, the fact that is used to describe a less-than-ideal state of affairs for a person means that it is likely to end up being used pejoratively by unkind people and children. The word 'special,' designed to avoid the pejorative connotations of 'retarded,' has itself become pejorative. I think any word thus coined would likely end up that way.

I want the world to treat my son with kindness, sympathy, and respect. Well-meaning changes in language, however, are an ineffectual route to such treatment.

Update: Oops! Per the comment left by my indefatigable co-blogger, let me clear: I don't think it's good, or even innocuous, to say "that is so retarded" (or lame, or dumb, or stupid, or that someone's a pussy, or any other negative word derived from a denotation or a feature of a sub-group of the human race). I'm just saying that I do believe a) it is often used without any mean-spirited intent, and b) probably shouldn't be motivation to actually change the word to describe the subgroup.

7 comments:

  1. Lots of thoughts on this.

    First of all, I'm glad you posted something on the subject. I am very interested to see how your thoughts continue to unfold, and think your perspective as a parent will be very valuable. Thank you for deciding to share this.

    I have no choice but to snort loudly at your very kind assertion that I am all that I ought to be. But somehow, I think you might not have been 100% serious.

    Anyhow... onward. I am not a fan of reclaiming "queer." I know that there are lots of people in the non-heterosexual world who embrace it, feel it is more inclusive, feel it is empowering to reclaim it, etc. I don't share their perspective, though I don't make an issue of it. But then, I tend to be something of an assimilationist.

    On a related note, I tend to call people out when they use "that's so gay" or "that's so queer" in my hearing. The fact that these are invariably people who are friendly with me in whichever context it occurs speaks to its being a dead metaphor. However, it still liguistically conflates "gay" or "queer" with "undesirable" or "bad," which is an association I don't particularly enjoy.

    Circling around to your main point, I tend not to be a fan of euphemism in medical settings, though I find myself using the same terms you lay out because they are what parents in those circumstances often have grown accustomed to, and I endeavor to be sensitive as much as I can. I think they lack specificity, and are meant to create an illusion of normalcy. I appreciate your desire to have a more honest approach to the reality you're living in, and think it will serve you well in the long run.

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  2. Actually, with doctors, I do say stuff like 'special needs.' I'm worried that they will think I am callous and indifferent if I say otherwise.

    Speaking of which, I saw yesterday an article for doctors telling them how to deliver a diagnosis of Down syndrome. Most of it made sense ("wait until both partners are together," etc). But one thing it told doctors is not to express pity or sorrow. This is silly. I think this plays into this pretense that retardation is just a different way to be, that it's not any less optimal a state. And I think doctors become so afraid of saying anything that sounds as if it might imply that retardation is less than optimal that they become very stiff and unable to talk about the problem as it really stands. Really -- it's okay to be upset that your kid will be retarded. It does not mean you don't love your kid and won't treat him with kindness and care. And it makes perfect sense for someone to express sorrow or pity. I've had doctors express more sympathy about my older son's ear infection pain. Come on, everyone.

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  3. PS. Per that is to gay, see my update of the post.

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  4. Even though I know it's a typo, I am incredibly tickled by "to gay." Yay! We're a verb.

    Skeptical OB has a lot to say about Down syndrome, and whether it is honest to pretend that raising a child with the diagnosis is not a particular burden, but is an "enriching" experience.

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  5. I just read a couple of Skeptical OB's posts. I agree mostly with her (setting aside abortion issues, which are more complicated than a quick comment on a blog post). However, (and I commented on the most recent post) she implies that the fact that having such a child is really stressful means it cannot possibly be enriching. I'm glad we don't pretend that it's really a good thing for everyone, but it is possible for something to be incredibly stressful and wearing, but also enriching in some ways. That isn't to say one should prefer a kid with DS, and it is indeed a particular burden. It's just that's it's also more complicated than she makes it out to be.

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  6. And I've been giggling over "to gay" since you pointed out. I wonder what the past tense is. It couldn't be just "gayed." Goy?

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  7. I think that "gay", as a verb, has been enjoying widespread use for quite some time, e.g. "Bruce, you really gayed up the kitchen with that floral wallpaper."
    -joe

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