Sunday, March 02, 2008

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

9 comments:

Michael Holt said...

While "In My Language" makes a great title for the video, I think considering what she's showing us to be a language would be a bit of a misnomer. On the other hand, she describes it as having a "conversation" with her environment which I do understand. I can't help but think that language is, in essence, a system for communication and must therefore be systematic. (I am willing to buy the idea of a language known only by one person as being an actual language, I just wouldn't think it to be a very useful one. After all, Native American languages that were forgotten don't stop being languages simply because no body remembers them.)

Back to the topic at hand, it seems to me what she's showing is a way of experiencing, and the conversation is the experience, but it's a non-systematic conversation, which I think precludes it from being a language per se.

All that said, I think she makes strong and valid points about the differences between how she experiences the world and how others experience the world and what our reactions are.

Kelly Hills said...

Mmm, I think you hit upon what I was trying to say, in my definition of language, better than I did - which is the systematic part. That is what allows it to be learned by multiple people and shared, to allow communication. If you can't teach a way of communicating to someone else, I'm not sure it can be called a language. (And this was also, in large part, the debate behind whether or not sign language is a valid language: did it have a consistent grammatical structure? Eventually, of course, the answer was yes.)

I like the idea of calling it her interaction with the world - while watching the video it struck me that, to borrow from Serres since he's been on the brain tonight, that she has no excluded third. She is intimately aware of every aspect of her environment, while those of us with what we'd call a more normal sensory/focus experience are less aware of the environment around us. We might not consider the air that connects us to one another, where it seems like she might.

It's certainly a very different way of living, and definitely one that shouldn't be automatically written off as deficient... but I'm not yet convinced there is cause for concern that we do assume people who cannot learn a shared language are, in some ways, not fully autonomous agents. Likewise, I'm concerned by the implications in the dedication at the end - that, for example, the problem with Ashley X's case is simply that we decided she wasn't an autonomous agent with no cause for the decisions made around her condition.

This, however, is more indicative, I think, of a greater problem I have with the disability rights movement as a whole.

SabrinaW said...

I too have conflicting thoughts on this topic. But I do stand by the position that parents have a responsibility to their children to make every reasonable effort to give their children the best chance at life they can. Children are not property, they are not trendy handbags, and they are not pets. Some parents forget that they are temporary guardians charged with a duty to equip their children with skills for becoming part of society.

Children do not ask to be born. But every other possible choice should be theirs.

Kelly Hills said...

But that gets into the thorny debate of what the best chance of life is. I had a Deaf teacher who used to talk about how they discovered she was Deaf; her childhood pediatrician had just told her parents she was slow/lazy/in her own world. (Nice, eh?) Anyhow, her mother wasn't convinced, but went along with doctor knowing best... and only actually realized something was wrong when said teacher, around age 4, was playing in the street and didn't hear her mother yelling at her to get out of the way of an oncoming car.

People hear that story and say - that's an excellent reason for someone to NOT be Deaf.

But said teacher went on to flip the example, and explain about all the problems that come from a hearing child growing up with deaf parents: they learn English late, they're often ashamed and refuse to sign, they have an equally bad, if not worse, time in school/learning, because of their stunted language skills, and like their deaf counterparts, rarely catch up without a lot of effort on everyone's part. Deaf children of Deaf parents do significantly better in classrooms/learning than deaf children of hearing parents, or hearing children of deaf adults.

So I think the entire idea of what's best for the child really is variable depending on the situation the child is in - it might be better for a hearing child to be born to hearing parents, and a deaf child to be born to Deaf parents.

SabrinaW said...

But should a child be intentionally altered to compensate for the situational shortcomings of the parents? That opens the door to a lot of problematic cases.

Kelly Hills said...

Yeah, except is it just "situational shortcomings" of the parents? It seems like, at least in some cases, it's almost cultural.

But beside from that, I think that in actuality, if you're making the argument of "best for the child" then you do sometimes get into situations where the best thing for the child is for them to be like their parents. We know it's situationally as bad for a hearing child to be the only hearing child in a Deaf community, as it for a Deaf child to be the only Deaf child in a hearing community. I think a lot of people want to instinctively say "well of course it'd be better for the hearing child anyhow, because when they're adults..." but if they're penalized by late learning of language, if they never catch up in language, don't excel in school, have learning difficulties, and the other problems that often come with hearing children of Deaf adults... then are they really doing what's best for the child to make sure s/he is hearing? Or would what's best for the child be, in this scenario, a Deaf child who thrives in a way the hearing child can't in that particular situation?

And there's a pretty big population that allows us to look at this kind of thing, given that Deafness has multiple causes, from disease while pregnant to hereditary conditions. So it's not really idol speculation on what happens to kids in these various situations. Like I said, I think it's contrary to a lot of people's intuitions, but research at least seems to indicate that it's generally best for a kid to be the same as the environment they're in.

SabrinaW said...

I'm still not convinced by the metric of children being like their parents; isn't part of the point of sexual reproduction to make the next generation better and more likely to grow beyond the parents?

I guess the question comes down to several nuanced options:
1) We want the best for children and assume (unless shown otherwise) that parents have their children's best interests at heart
2) We want the best for children and the best is for them to be like their parents.
3) We want the best for children and the best is for the parents to choose what they want to do with the children since we are all products of our parents.

There is also the conflict of action/inaction - which status is the default? And which is the intervention?

What if the parents believe that making the child dissimilar to them is in the child's best interests? For example, what if transgenic interventions were available, and parents believed it was better to make their child into a human/non-human animal chimera by inserting other DNA to make the child stronger/faster/healthier, etc?

SabrinaW said...

I guess that I see a slippery slope problem with justifying the violation of a child's bodily integrity (or is that "developmental integrity"?) for artificial human perceptions of aesthetics and culture. There have been a lot of atrocities justified by that logic, including FGM (in cultures using FGM, women who are not cut are shunned and treated as pariahs; would they be better then to have been cut so they would fit in with their culture?).

Daniel Goldberg said...

Sabrina,

The best interests standard in general doesn't really shed much light on this issue, because there is no question that the parents fundamentally believe that having a Deaf child is in their child's best interests, akin to the way many Jewish parents might think having a Jewish child is in their child's best interests.

The obvious response is that Jewish culture is not analogous to Deaf Culture, but that response is question-begging, IMO. The entire question is whether the child is better off being a participant in Deaf Culture as a Deaf person. And the answer to that question, I submit, is not nearly so obvious as it is often taken to be.

The situation is further complicated with the knowledge that overwhelmingly, able-bodied people consistently and dramatically underestimate the quality of life for even severely impaired persons. As a hearing person, it is difficult for me to understand how being Deaf is not worse off than hearing, but the evidence above should give us caution in trying to assess what is in a disabled person's best interests.

Finally, as Kelly notes, participants in Deaf Culture fundamentally reject the notion that deafness is an impairment. They argue -- quite rightly, on this point -- that being deaf is akin to living in a foreign country where one's language (SL) is not widely spoken.