Cochlear Implant Manufacturer Facing Multi-Million Dollar Fine

As a quick search on this blog for the word deaf shows, I am a pretty vocal advocate of Deaf rights, and quite anti-cochlear implant for d/Deaf children. Because of the nature of the procedure, and its permanence, I do believe it's a choice that an autonomous agent should consent to rather than have pushed onto them. And this article from the LA Times just adds to that belief: the FDA wants to fine cochlear implant manufacturer Advanced Bionics $2.2 million for apparent manufacturing violations that actually put patients at risk for additional hearing loss, electrical shocks, and other issues. (Frankly, those two are enough, as far as I'm concerned.)

As for my other objections, they are relatively simple from a technological standpoint. Unless technology has rapidly changed in the last few years, one of the major drawbacks of cochlear implants is that they do destroy any residual hearing. This is why many doctors suggest only implanting one ear, in case a better technological or biological solution comes along later down the line. So you are wedded to the device implants, and that technological level, for the remainder of your life.

Stop and think about this for a minute. Go dig around in your junk drawer and take a look at your cell phone from three or four years ago. Or better yet, go find a computer from the 1980s.

How would you like to have that technology (in all it's now unsupported glory) embedded as a part of you that you are reliant upon for the remainder of your life, regardless of whether or not people continue to support that level of technology?

From a purely technological, I spent too long in the software industry, standpoint (and leaving out all notions of Deaf culture), it's simply a bad idea.

This Advanced Bionics lawsuit is just another in a long list of reasons cochlear implantation is a decision that should be made only by competent adult agents.
-Kelly Hills

"Sweet Nothing in My Ear"

Tonight at 9pm, Hallmark is airing the original movie "Sweet Nothing in My Ear". Before you decide to lynch me, hear me out: the movie is about a married couple, one hearing and one Deaf, who have to decide whether or not their deaf child should receive a cochlear implant. Director Joseph Sargent has a history of working with Deaf actors and making movies that are considered accurate and respectful towards the Deaf point of view, and the cast is full of both Deaf and hearing actors, including Marlee Matlin in her first full ASL-only role since "Children of a Lesser God."

At its heart, this story is one of medical debate: is hearing the norm? Is a lack of hearing a handicap that needs to be fixed? Or is it just a part of life, a condition to be accepted and dealt with and moved on from?

I know this is a subject that gets a lot of commentary around here, which is why I'm mentioning the movie being on this evening. Given I'm in the finals crunch, I probably won't have time to watch and/or comment on the movie for a few days, but did assume others here would likely be interested - both in the subject matter, and how ethical dilemmas are played out on television.
-Kelly Hills

Primum Non Nocere

First, do no harm. I don't know anyone who practices any aspect of medicine who disagrees with this foundational concept of what medicine should be and do - do no harm. And on an intuitive level, harm seems so self-evident, and easy to avoid.

Except, of course, anyone who's spent more than an hour reading about the history of medical ethics knows that this isn't the case. Harm, unfortunately, is one of those words that is flexible, has a definition that changes depending on context, case, even attitude. Ultimately, what does it mean to cause harm?

I had a class last year where a student would argue that anything which caused someone to be "not normal" was harmful, and therefore doing no harm meant doing your best to make sure everyone was normal. Ignoring the more Harrison Bergeron aspects of that thought for a minute, what does it even mean to be normal? Again, it's one of those things that seems self-evident, until you stop and think for a minute. We're accustomed to this argument now (at least, I hope the folks who'll be reading this are) when it comes to think like Deafness or dwarfism - parents who are dwarfs or Deaf who want children sharing these same genetic and physical traits. It is, for them, what is normal - point being that normal itself is not a concrete concept, but flexible. You could argue that normal is normative.

There's been a lot of debate about whether or not, for example, Deaf parents should be "allowed" to have Deaf children - that is, should fertility doctors be trying to create embryos that are deaf, should couples be able to request eggs or sperm from Deaf donors to increase their chances of having a Deaf child. I've argued strongly for this in the past, and won't go into the reasons here, except to say that part of the reason for my arguing for this is based on the notion of preserving culture, and not making a judgment call on what is normal. There are, after all, many people for whom the experience of being Deaf is perfectly normal, and I'm simply not comfortable pointing a finger and saying "you are abnormal".

That's why this particular YouTube video has been so thought-provoking for me. I suppose, when it comes down to it, I do have a concept of normal that includes "being able to communicate with the world" - I don't assume that means everyone; after all, I don't speak the majority of the languages on this earth. But the idea that someone who has what we would consider severe autism is communicating with the world, and it's simply the world that has not yet figured out how to communicate in return, is a novel and I'll admit, somewhat difficult, concept for me to wrap my head around.


Amanda Baggs, the woman in the video, is featured this month in Wired, and has a blog here.

I won't suggest that Ms. Baggs doesn't bring up interesting - and disturbing - questions in her video (obviously there's something here to think about, or I wouldn't have anything to write). But I wonder - given what she describes as being her language, is it even possible that someone who is not autistic, or cognitively different, could learn to communicate in it? Or maybe even more to the point - in my general notion of a language, it is a device that allows me to communicate with you - we both have the ability to learn it and use it to exchange ideas. Is Ms. Baggs' language one that more than a single person knows, uses, inhabits? I'm not necessarily convinced that, if it is an individualistic thing, if she is the only person speaking this language, than it can rightfully be called a language. But I also don't want to swing so far to the other side as to say it's not possible - I simply don't know.

I have some other concerns that are still marinating, so I'll just leave it at this for now.
-Kelly