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