Tuesday, September 29, 2009

Episode Two (More on That Video)

In Episode One, I gave my response to the argument (of sorts) presented in the video for why it is wrong to give young children cochlear implants. As you may recall, I disagreed with this argument.

Now let's put this video in context. First of all, it's nothing new -- just a very effective and graphic repackaging of an old message. There is, for various reasons, great hostility among some in the Deaf community toward cochlear implants in general, and especially toward the idea of implanting young children.

Now, my perspective on cochlear implantation is that it's a fabulous technology that gives my son access to sound, and that access to sound has manifold and tremendous benefits that far outweigh the small amount of risk associated with the surgery and the daily inconveniences of living with the equipment. Even the extraordinary expense is more than compensated for by the savings in special education costs.

Obviously not everyone shares this perspective. One of the common counterclaims is that one does not need sound in order to live a rich, full, successful life. Many Deaf people offer themselves as living proof of this fact. I will argue, and I think they will agree with me, that many aspects of life are a lot easier when you can hear, but as someone pointed out during a recent discussion on cicircle, "easier" does not necessarily mean "better." I know that many deaf/Deaf people feel that some of their best life experiences and lessons are rooted in their deafness, that in fact it has enriched their lives. I respect this, and I hope that Ben has some of those same enriching experiences, despite the fact that he is hearing for many hours of each day. I can see why some people would feel that the expense, risk, and hassle of implantation are not worthwhile, given the fact that there is a viable alternative (namely, growing up Deaf). I don't have a good response to this argument. (Well, I have a response, but it's guaranteed to cause offense, and that's not my goal here.)

Another very common assertion is that hearing parents choose to implant their deaf children because they are too lazy to learn ASL, and that depriving a deaf child of ASL is an evil in itself, aside from the other evils of implantation. I've got a response to this one. The first claim is simply false. I've gone through the experience of implanting my child; I am currently going through the experience of teaching my child ASL; I know which process is harder, and it ain't ASL. We don't implant our children because we're lazy. I disagree with the second claim as well. First of all, depriving a child (any child) of language altogether is evil, but I don't see anything inherently evil in teaching a child one language instead of another. Second of all, I'm not in fact depriving Ben of ASL. I'm doing my best to teach it to him as a second language. The beauty of the CI is that it has made it possible (in fact, fairly easy) for him to learn spoken English (the most common form of communication in our society) in addition to ASL, French, Latin, Klingon, or whatever else he takes a fancy to. In what way is he deprived?

Nevertheless, I have some sympathy to this position as well. As I discussed in an earlier post, many deaf people, especially of an older generation, were subjected to relatively ineffective oral-only education, resulting in great frustration and poor educational outcomes. When they finally encountered ASL, it gave them a new lease on life. Those who were given the opportunity to learn ASL as a primary language generally fared much better. When I exchanged some comments with lagunazurfer, he predicted that Ben will suffer terribly because I am not bringing him up Deaf with ASL, in the same way that many other deaf children (and perhaps lagunazurfer himself) suffered. A charitable interpretation is that he is sincerely concerned about my son's supposedly inevitable suffering.

Also, remember that deaf people have been persecuted at various times throughout history. Under the Nazis, babies and children with congenital disabilities were often taken from their parents and killed through lethal injection or starvation, in order to rid the race of "impurities". A law was passed allowing doctors to perform forced abortions when they believed a fetus had a disability or deformity. Adults with disabilities were forcibly sterilized. There was a Nazi league for the deaf, led by a deaf Nazi, that advocated voluntary sterilization. For awhile, people with disabilities were rounded up and killed en masse in "shower" rooms that were later adapted for mass killings of Jews. Altogether, 200,000 people with disabilities were killed by the Nazis. (You can find more in a Google search. Also, read this article by Mishka Zena, a very influential and thoughtful Deaf blogger, about A.G. Bell's link to Nazi atrocities.)

It's a horrifying history, and it is not hard to understand why this would lead to a certain paranoia toward any attempt to address deafness medically, or more generally to treat it as a defect to be eliminated. I think that with regard to cochlear implantation, it is just that -- paranoia, rather than a rational fear of an actual threat of physical harm or oppression. Nevertheless, I can feel some sympathy on this point as well.

So that's my understanding of the various opposing perspectives. I hope I haven't portrayed them inaccurately. In the end, I am not persuaded. To the contrary, we have never even for a moment regretted our decision to get Ben a CI. Not a day goes by that I am not amazed by and thankful for this technology.

My thoughts on *that* video, Episode One

Well, by now you might have had a chance to watch "My son is deaf, finally!" posted by lagunazurfer on youtube: http://www.youtube.com/watch?v=-YN5Fdz1En0. If you haven't, you should do so before reading on, because I'm going to spoil the ending.

Yup, it's quite a video. It is, in the end, a "prank" -- and not a very funny one. The actor (who I assume is lagunazurfer himself) purports to be a father describing a recent operation to remove his son's cochleas. In the end, he reveals that nothing of the sort happened, and suggests that such an operation is the moral equivalent of cochlear implant surgery, and any outrage we might have felt toward him should be directed toward parents who implant their children.

This video made the rounds at listenup and cicircle recently. It didn't get much discussion at the former; one person wrote in saying that it was a good video, and she obviously agreed with the message. As you can imagine, it provoked a very different reaction on cicircle, which is comprised exclusively of CI families.

It is a good video, in the sense that it is well-made and it has obviously been effective at stirring up emotions and controversy. At first, it seems like a pretty good argument, an argument by analogy. Hearing parents are dismayed to discover that their child is deaf, and they implant him so that he will be "more like them." How is this different from deaf parents surgically altering their child to be more like themselves? Therefore any objections that the viewer might naturally have toward the latter would apply to the former.

I don't think it's a very good analogy, but of course that's premised on the assumption that hearing is a good thing. It's an ability that almost all human beings possess, that in fact many animals possess, and with good reason. There's no doubt that it is far easier to navigate through a difficult and dangerous world when you can hear. In modern society, it is far easier to get an education or a job, buy something, go to the dentist, and in general interact with other human beings if, like them, you can hear. And indeed the blogs and online posts of deaf people are full of complaints (perfectly reasonable and valid ones) about the daily hardships of being deaf in a hearing world. So a safe, effective surgical procedure that restores some measure of the ability to hear is not the same as surgery that takes away that ability.

Another obvious bone to pick with the video's "logic" is the claim that parents should at least wait until a child is of an age to make informed consent before imposing cochlear implant surgery on him or her. The idea is that the child should have a choice. The problem with this is that waiting has the effect of eliminating choice, as Leah explained in a comment to my earlier post. The longer the auditory system goes without stimulation, the less effective the implant is. Children who are implanted in middle childhood or later are often able to make only limited use of the CI, and it always takes years of therapy to make any progress at all. This might still be seen as a successful outcome, depending on the expectations of the family, but it's nothing like the outstanding success that Ben has achieved already, a little over a year post-activation, with almost no therapy to speak of. So waiting until a child is old enough to consent means waiting until learning to hear effectively with a CI is no longer a realistic option. How is this a choice?

As usual, I'm out of time but certainly not out of words; I have much more to say on the subject. I'll save it for a follow-up post, in which I discuss the context and motivation for the video. Suffice it to say for now that I am actually very sympathetic to the Deaf perspective on CIs, in light of the historical and contemporary context, even though I disagree rather vehemently with it and the alarmingly vicious tone some of them take when expressing it.

Saturday, September 26, 2009

Catching Up

It's almost the end of September, and I never got around to putting up the August calendar! Life has been crazy busy lately. So here goes:

Blueberries figured prominently in our lives at the end of July and into August. We made a couple of trips to a local pick-your-own farm, and Ben had a great time. He spent as much time in the pool as he could manage, and ran through the sprinklers on the 20th. He has developed a keen interest in M&M's, as you can see on the 12th and 16th. As of the 27th, we had added "running the bases" to his nightly wear-out routine (a last attempt to burn off some energy before bath time). This involves running vigorously between points such as "ottoman first base" and "Mommy and Daddy's bed second base". On the 28th we must have read If You Give a Pig a Pancake, although not for the first time -- it's been a fan favorite since spring. On the 30th, after several weeks of searching, we managed to find an appropriate Benny-sized chair. I must draw your attention to the 21st because I am inordinately pleased with my rendering (in broad-tipped marker, I remind you) of Mary Poppins. Ben now loves the movie Mary Poppins almost as much as Yellow Submarine. (Tonight in the bath he was singing "Sister Suffragettes".)

Tuesday, September 22, 2009

Interesting video, and Ben's Thoughts on Bodily Emissions

You might want to check out this youtube video:


Make sure you watch it all the way through to the end. I won't comment more about it now, but I'll follow up later after some of you have had a chance to watch it and think about it.

The other day, as Neil was getting Ben up from his nap, Ben announced, "I don't want to poop, I just want to toot, that's the idea." (Ben had in fact pooped, and he was trying to clarify what his original intentions were.) When this was reported to my sister, it turns out that both she and I had the same mental reaction, namely to have a rather graphic reinterpretation of the Arlo Guthrie classic start a continuous loop in our brains.

Perhaps, as in some of Jess' memorable posts, I should've prefaced this with a warning that This Post Discusses Poop.

Monday, September 21, 2009

Thinking of Jennifer

Jennifer's mother has lost her battle with ovarian cancer. Please stop by her blog and offer her comfort.

Friday, September 11, 2009

Excellent post by Peas' Mom

You need to read this post: http://nopeas.blogspot.com/2009/09/dont-read-blogs.html

It captures so well the feelings and challenges of those first few months. And Susannah's comment at the end has some great advice for audiologists -- give out e-mail addresses (not phone numbers), as well as (I'll add) references to listenup and cicircle. Before we can even start to make sense of the medical information, we need support and reassurance, of a concrete kind, in form that we can believe -- meaning from other parents.

Thursday, September 3, 2009

More on Wait Time

My mother (Elsie Wilson) left a great comment after this recent post about the importance of Wait Time. I especially like the "breathing" analogy -- that's particularly true of our hearing loss kids for quite awhile after they first get access to sound.