Thursday, January 14, 2010


When the same idea keeps coming up over and over again I get the feeling that there’s something I need to look at, and think about, and eventually come to some sort of resolution. It’s not that I think some invisible hand is driving me, but that I think that society is grappling with an issue that I’m “tuned in” to. The issue for the last week or so has been “human-ness”.

It probably got kicked off by watching a PBS show – “The Human Spark”. Basically the premise is finding a dividing line between human and non-human. They started with genetics and I was thoroughly fascinated. When they touched on people with genetic abnormalities (micrencephalous) I started to feel a little uneasy. Clearly understanding why brains develop is important and the fact that genes were identified by a group of patients is good detective work, but I felt uncomfortable with the implication. Somehow this kid on the TV wasn’t “one of us.”

Then there was a fairly nasty discussion on a friend’s facebook page about a study (Actually this article about the study) that was looking at the idea that “miswiring” in a developing brain was the cause of autism. Several autists felt insulted by the idea that they were labeled as “wrong” as opposed to just different. Initially my reaction was that scientific studies were important, while the semantics of a Business Week article was not all that important. Understanding root causes can lead to better therapies and in the end inclusion of people like my son. But this comment from Kristina (who had posted the link to the article) – “I read plenty of the same "demeaning" sorts of stuff every day about all kinds of things, and have for a long time, and regret any insensitivity, which was not intended. I have plenty of mis- and dys- wirings of my own.” – really made me stop and reconsider my discounting of semantics.

Then this article in the Baltimore Sun really brought it to a head. In particular this passage –

Disorders like autism are not only perplexing to scientists, they're frustrating, Chakravarti said.

"We attach much more meaning to them than to other disorders, because they have to do with the basic aspects that make us human - our ability to feel, to think, to speak," he said. "It destroys, often, the sense of self that we have."

So there you have it, in black and white, the basis of my discomfort.

Here’s what I believe. My son has had some serious challenges in his life and the will continue to have them through his life. He will not be cured, because his autism is at the basis of how his brain functions. He, along with his autism, is the child that I love and I would not wish him out of existence. My son, with support from me and others, will continue to figure out ways to fit into our society and ways to find happiness. Regardless of how different he is, I know that he is human, and no less human than others who are not autistic. The level of problems that he has makes me judge his neurological issues as defects, but they do not stop him from being “one of us.” I know that thinking about “human-ness” is part of our humanity and I don’t think the thought and research cited above should end. I do think that it is important not to discount humans with disabilities, i.e. not to be “ableist.” I challenge anyone to spend a decent amount of time with my son (with an open mind) and come to the conclusion that he is less than human. I will speak against implications that those with autism are somehow not "one of us."

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